Endometriosis Explained—Understanding Signs, Symptoms, Treatment Options, New Therapies & Pregnancy Outcomes

Posted by Medical Board on March 15, 2019 in Hormones Women Last updated on March 15, 2019
Endometriosis Explained—Understanding Signs, Symptoms, Treatment Options, New Therapies & Pregnancy Outcomes

Though the majority of women will navigate menstruation with only mild to moderate discomfort, for a small number of females, the childbearing years may be agonizing.  Fraught with intense pelvic pain, intestinal disturbances, and marked fatigue, about 11% of American women suffer with a condition known as endometriosis.[13]

Endometriosis affects 5 million women in the United States alone, most of childbearing age.[5][23] Many of these women, in their 30’s and 40’s[25]suffer debilitating pain and discomfort as a result. Some will have difficulty becoming pregnant. 

The Cost of Endometriosis

According to recent statistics, endometriosis costs an estimated 

$12,419 per woman, annually.  About 66% of this is the result of actual healthcare costs, with the rest attributed to the loss of productivity.[18]

What is Endometriosis?

Endometriosis occurs when tissue, created to line the uterine wall each month grows beyond the uterus. This tissue can be found on ovaries, fallopian tubes, the outer uterus and surrounding tissue, and in the vagina, cervix, vulva, bladder, rectum or bowel area as well.

What are other names for endometriosis?

Endometriosis may also be referred to by physicians as “pelvic pain”, or “endometrioma”.[9]

The scientific name for endometriosis that invades lung tissue is      “Catamenial pneumothorax”.[7]

Where does tissue grow?

Tissue similar to the tissue that lines the uterus is referred to as the “endometrium”.  The majority of this type of endometrial tissue grows within the pelvic cavity.  In rare cases however, endometrial patches may be found growing in the lungs and in other areas of the body.[2]

Damaging Endometrial Tissue

Endometrial tissue grows in patches that may be referred to as implants, nodules, or lesions.   Endometriosis begins with tiny, pimple-like “implants” that vary in shape, size, and color. These may continue to grow, or can disappear all on their own. Once implants continue to progress, they may appear as lesions, nodules or cysts, referred to as “endometriomas”. These range from small pea size cysts to the size of grapefruits. They also vary in color from clear, to red, or dark brown, filled with old blood.[1]

Where are endometrial patches and lesions found?

Endometrial tissue may grow in a number of places including:

  • Below the ovaries
  • On fallopian tube tissue
  • Behind the uterus
  • On the connective tissue that holds the uterus in place
  • On the bowels
  • On the bladder
  • On the ovaries[8]

What are the symptoms of endometriosis?

Several symptoms may present with a diagnosis of endometriosis.  These may include:

  • Very heavy menstrual bleeding
  • Irregular menstrual bleeding
  • Strong abdominal pain that precedes menstruation
  • Significant pelvic pain before or during menstruation
  • Severe pelvic pain during sexual intercourse
  • Pelvic pain when emptying bowels or during urination
  • Differences in bowel movements or in urination
  • Bleeding from either the bowel or the bladder when not menstruating
  • Feeling bloated
  • Difficulty becoming pregnant
  • Fatigue and moodiness near the time of menstruation
  • Nausea or vomiting[6]

Other symptoms may also include:

  • Significant lower back pain
  • Migraine headaches near the time of menstruation
  • Allergies around the time of menstruation
  • Fatigue that is more pronounced with menstruation

Why does endometriosis cause pain?

Tissue growth associated with menstruation swells and bleeds in areas where it cannot be easily expelled from the body.

This can lead to myriad medical problems including:

  • Blocked fallopian tubes
  • Ovarian cysts
  • Inflammation and swelling of tissue
  • Adhesions and scar tissue that binds organs
  • Intestinal and bladder problems
  • Endometriosis can cause adhesions and scar tissue to develop that can distort internal organs and fuse anatomy together. This is known as “frozen pelvis” and can be very serious.[23]
  • Infertility may also be a result of endometriosis. Fallopian tubes can become blocked or damaged through scarring, and ovaries can develop cysts and adhere to the uterine wall. It is estimated that 50% of infertile women suffer from endometriosis.[4]

What symptoms are most likely to present in patients with endometriosis?

About 87.7% of women suffer with dysmenorrhea or menstrual pain and cramping while in the menstrual cycle[7].

How common is endometriosis?

Endometriosis affects more than one in ten American women.  Though it most commonly occurs when women are in their 30’s and 40’s, it can also affect teenagers as well.[13]

How do I know if I have endometriosis?

There are many possible manifestations of the condition that could indicate endometriosis including:

  • Painful menstrual cramping
  • Lower back pain
  • Deep pain during or after sexual intercourse
  • Painful urination or bowel movements
  • Spotting between periods
  • Intestinal pain
  • Infertility
  • Digestive problems including diarrhea, nausea, bloating, constipation

How widespread is endometriosis?

In one study, it was found that 82% of women with pelvic pain (who did not experience the absence of pain using mild pain relievers or antibiotics) suffer with endometriosis.[20]

What causes endometriosis?

The cause of endometriosis is not completely known, however there are some theories that exist.  These include:

  • Retrograde menstruation—Some researchers believe that blood and tissue contained in the uterus migrate through fallopian tubes and into the abdominal cavity.  The uterine walls are covered with mucous membranes that thicken during the menstrual cycle to nourish and support a fertilized egg. If fertilization does not take place, the uterine lining is normally shed through the vagina. The female hormones, estrogen and progesterone control this cycle of build up and shedding of tissue. These may contribute to the condition.
  • Cellular changes—One theory posits that cells living outside the uterus convert to those that are the same as endometrial cells.  This may explain why endometrial tissue grows in unusual areas such as the thumb or knee. 
  • Cellular migration—Some research suggests that uterine cells may actually travel from within the uterus to other organs.
  • Cellular transfer with surgery—This theory supports the idea that endometriosis spreads from one area of the body to another through surgical transfer.  This can happen when endometrial tissue is present, and diseased cells come in contact with healthy tissue.  Such may be the case with a cesarean section, and the scar created by surgery.[16]
  • Stem Cells—Even without menstruation, stem cells may implant in tissue and create lesions.
  • Genetics—The risk of endometriosis increases 7-10 fold if a mother, sister, daughter or other close female relative has the disease.
  • Environmental Toxins—Cellular changes that promote implantation of endometrial cells or a poor immune response may be partially responsible for endometriosis.[7]

Other possible causes of endometriosis may include an immune-system disorder that inhibits the body from detecting or killing endometrial tissue growing outside the uterus.[12]

How is endometriosis diagnosed and treated?

Some surgeons both diagnose and treat the disease at the same time by identifying endometriosis and surgically removing invasive tissue laparoscopically (minimally invasive procedure).  This allows patients to heal faster with less discomfort and scarring, which can further interfere with fertility.  The teenage population with endometriosis has traditionally been more difficult to treat.  Total excision, without the use of long-term hormonal suppression medications may however make it possible to completely eradicate diseased tissue, even in young women.[20]

What tools do physicians use to determine treatment for endometriosis?

Researchers and medical health practitioners may use the Pelvic Sign and Symptoms Score (CPSSS) to help rate the intensity of pelvic pain and overall severity of disease.  Based on these numbers, physicians develop a treatment plan and pain management program for patients.[15] 

Diagnosing Endometriosis

While a pelvic examination is conducted, as well as a thorough background history, a laparoscopy is done to completely diagnose endometriosis. Other tests may include a biopsy, ultrasound, CT scan, or MRI. Treatment will depend on an individual’s age, general health, symptoms, and future plans for pregnancy.[7]

Can endometriosis be prevented?

Currently there is no known preventive cure for endometriosis.[7]

*While there is no known cure for endometriosis, symptoms may take years to surface, or never surface at all. Some women cope with minor manifestations very well, while others live with debilitating pain and infertility.[17]

What type of treatment will I get if I have endometriosis?

Treatment approaches for endometriosis vary depending on the location and severity of the disease.  

One or more protocols may be involved that include:

Hormonal Treatment

This consists of treating a patient with hormone therapies to help reduce symptoms associated with the disease.  Inter Uterine Devices (IUD’s), birth control pills, and aromatase inhibitors (decrease estrogen) may be used for endometriosis.

Surgical Treatment

Surgery to remove the diseased tissue, uterus, or ovaries (partial or total hysterectomy) may be performed.  Less invasive surgery, done laproscopically to remove endometrial tissue may also be a treatment option as well.[11][2]

Pain Management

Drugs, physical and natural therapies, and surgery may be performed to mitigate pain.

Treatment for Endometriosis—A Multifaceted Approach:

  • NSAIDS, (nonsteroidal anti-inflammatory drugs)
  • Opioids could also shed light on how endometriosis causes pain.
  • Hormone Treatments
  • Oral contraceptives
  • Surgical Treatments including,
  • Laparoscopic surgery and laser treatment/incising
  • Laparotomy
  • Hysterectomy
  • Surgery severing pelvic nerves
  • Laparoscopic Uterine Nerve Ablation
  • Presacral neurectomy[24]

How do different surgeries for endometriosis differ? 

Laparoscopy—This may be used to both diagnose the disease and to remove damaged tissue or growths.  Because only a small incision is made, healing is much quicker.  

Laparotomy—This type of surgery involves the removal of scar tissue and growths, through a larger incision site.  This generally takes longer to heal, though female reproductive organs remain in place.

Hysterectomy—In some cases the partial or total removal of the uterus, fallopian tubes, or ovaries is necessary to treat endometriosis.  This procedure may be used when endometrioses is severe and cannot be treated any other way.  This may be appropriate in women who do not wish to become pregnant in the future as well.[20]

What other medications are used in pain management of endometriosis?

Besides anti-inflammatory drugs and opioids, muscle relaxants and neuropathic medication may be administered to patients.

What specific therapies can I expect to receive?

Depending on the severity and location of endometrial tissue, the age of the patient, and whether or not they plan to become pregnant, endometriosis may be treated in one of many ways.  

These include:

  • Laparoendoscopic Excision

Medications that help suppress symptoms include:

  • GnRH agonists/antagonists
  • Synthetic androgens 
  • Oral contraceptives
  • Injectable contraceptives
  • Aromatase Inhibitors 
  • Physical therapy

Complementary therapies include:

  • Acupuncture
  • Aromatherapy
  • Herbal therapy
  • Bach flower
  • Exercise
  • Myofacial release therapy
  • Nutrition based therapy
  • Pain management therapies
  • Hysterectomy to remove the uterus and/or ovaries[11]

Currently, about 5 million women suffer with endometriosis. The disease has a high rate of recurrence however, and can negatively impact quality of life.  Current research using genetic sequencing to help identify markers for the disease may lead to new treatment protocols and therapies in the future.[5][23]

What alternative or complementary therapies for endometriosis exist?

Acupuncture

Some women may not tolerate pharmacological treatments for endometriosis or pelvic pain.  And while endometrial tissue responds well to surgical ablation or excision, the incidence of reoccurring endometrial tissue disease is high.  Though small studies involving acupuncture for the treatment of symptoms have been conducted, further research in this area is needed.[3]

What lifestyle changes can I make to help manage endometriosis?

While there is no complete cure for endometriosis, a diet that: 

  • Promotes anti-inflammation
  • Limits unhealthy chemicals and additives 
  • Boosts omega-3 fatty acids and antioxidants
  • Increases the intake of A, E, and C vitamins may help significantly reduce many of the painful symptoms associated with the disease.

Anti-inflammatory Diet for Endometriosis

Adapted from the Saint Louis University School of Medicine Department of Obstetrics, Gynecology, and Women’s Health Center for Endometriosis, the following diet is recommended:

  • Alcohol, caffeine & sweets 1-2 svg/week 
  • Low-fat Dairy (Dairy-free if necessary) 3 svg/day 
  • Whole grains (Gluten-free if necessary) 3-5 svg/day 
  • Healthy cold-pressed oils (Extra virgin, canola flaxseed, nut- based oils), 2-4 svg/day 
  • Fish, seafood 3-5 svg/week 
  • Vegetables 4-5 svg/day 
  • Nuts and seeds 1-2 svg/ day 
  • Lean meat, poultry, eggs 3-5 svg/week, Beans, legumes 2-4 svg/week
  • Red meat 1-2 svg/week 
  • Fruits 1-2 svg/day[22] 

Natural Supplemental Support for Endometriosis

Nutritional deficits that contribute to, or complicate endometriosis can be addressed through dietary supplements such as:

  • Omega-3 fatty acids, fish oil—Reduces inflammation and improves immune system
  • Vitamin C— Provides antioxidant protection and immune support
  • Alpha-lipoic acid—Antioxidant support
  • L-carnitine—Supports pregnancy by promoting embryo health
  • Calcium d-glucarate—Helps rid the body of toxins
  • Diindolylmethane (DIM)— Helps metabolize estrogen
  • Coenzyme Q10 (CoQ10)—Provides antioxidant/immune support[1]

Endometriosis, while common, can rob a woman of a healthy, pain-free life, and may even affect the ability to become pregnant. While there is no cure for this condition, treatment is available to slow endometrial growth, to manage pain, and to facilitate fertility. 

Early detection and complete excision may also help arrest further endometrial progression.

Other Recommendations for Endometriosis 

Get regular exercise—This may help the body by naturally lowering circulating estrogen levels.  High estrogen promotes endometriosis.

Reduce alcohol intake—Alcohol increases estrogen levels in the female body.

Limit caffeine—Coffee, diet soda, tea, and energy drinks all contain caffeine that raises the level of estrogen in the body.[13]

Who’s at risk for developing endometriosis?

While medical research does not definitively identify what causes endometriosis, certain women may be at higher risk for developing the disease.  

High-risk individuals may include:

  • Women who have other family members with endometriosis
  • Women who have never become pregnant or had children[11]
  • Risk factors for endometriosis may also include:
  • Women who began menstruating at a very young age
  • Women who have a closed hymen that interferes with regular menstrual flow 
  • Women who have more frequent periods
  • Women who menstruate 7 days or more monthly[9]
  • Having a mother, sister, or daughter afflicted with the disease
  • First time childbirth after age 30
  • Caucasian women
  • Women who have an abnormal uterus

New Research and Risk Factors

Women exposed to a specific ultraviolet filter (sunscreen) that is present in some cosmetics may be at higher risk for endometriosis.

Women who are exposed to high levels of chemicals found in many plastics and other industrial compounds may develop endometriosis.

Women who demonstrate higher than normal urine concentrations of chromium and copper from environmental exposure may be at risk for developing endometriosis.[19]

Statistically, about 4-30% of women of childbearing age have endometriosis and about one in two women with fertility issues suffer with the disease.

Pregnancy and Endometriosis

Women who have previously struggled with endometriosis may be at higher risk for problems during pregnancy that could seriously affect the baby.[14]  

These may include:

  • Miscarriage
  • Placenta previa (placenta covers the cervical opening)
  • Small gestational age
  • Preterm birth
  • Cesarean delivery

Women diagnosed with endometriosis require close monitoring during pregnancy.

Other Possible Pregnancy Complications

Further pregnancy complications may include:

  • Spontaneous bowel perforation
  • Ovarian cyst rupture
  • Uterine rupture 
  • Intraabdominal bleeding due to decidualised endometriosis lesions 

How much does endometriosis affect pregnancy?

Women who have endometriosis have three times as many tubal pregnancies as women who do not have the disease.  They also have about twice as many miscarriages and are at a higher risk for placenta previa, antenatal hemorrhage of no known cause, or postpartum hemorrhage.[10]

Associated Diseases and Disorders

Because of specific immunological abnormalities and cell function, scientists now believe that there may be a connection between endometriosis and other autoimmune diseases.  These include:

  • Systemic lupus 
  • Erythematosus (SLE)
  • Hypothyroidism
  • Rheumatoid arthritis
  • Sjögren syndrome
  • Multiple sclerosis
  • Inflammatory bowel disease
  • Allergy-related autoimmune issues

What’s new in endometriosis research?

Transgenic models may be employed in the future to help identify the role of specific genes and how they relate to the eventual expression of endometriosis.   Development in this area has expanded as the familial link between women who suffer from endometrioses is explored.

Understanding specific hormone involvement in the overall disease process may be key to understanding and treating the disease as well.  Progestins, known to have anti-inflammatory characteristics appear to have little or no effect on endometrial lesions or the utopic endometrium in women diagnosed with endometriosis.  Because progestins differ in glucocorticoid and androgenic properties and how they function, this may prove to be important in the modification of future disease treatment.[18]

Using a drug initially developed to treat depression and anxiety, assistant professor of neuroscience at University of Texas, Rio Grand Valley School of Medicine has demonstrated the ability to actually slow the progression of endometriosis in rat models.  The compound known as “Antalarmin” meant to treat generalized anxiety worked to block the production of CRH-1 (corticotropin releasing hormone) present in high levels when endometrial tissue is present.  The research holds great promise for women who suffer debilitating pain from endometriosis and may lead scientists to further develop new medications to arrest the disease.[21]

While endometriosis affects over 11% of American women daily, the treatment outlook for those who suffer is encouraging.  With careful medical intervention, close monitoring by a regular healthcare professional and important lifestyle changes to diet and activity, most women will go on to lead healthy and happy lives.[7]

References

1A, 2013 (1997) Endometriosis. Available at: http://umm.edu/health/medical/altmed/condition/endometriosis”>http://umm.edu/health/medical/altmed/condition/endometriosis (Accessed: 13 January 2017).

2″About Endometriosis”. Http://Www.Nichd.Nih.Gov/, 2019, https://www.nichd.nih.gov/health/topics/endometri/conditioninfo.

3″Acupuncture For Pain Of Endometriosis – Full Text View – Clinicaltrials.Gov”. Clinicaltrials.Gov, 2019, https://clinicaltrials.gov/ct2/show/NCT03125304.

4Coleman, L. and Overton, C. (2015) ‘GPs have key role in early diagnosis of endometriosis’, The Practitioner., 259(1780), pp. 13–7.

5Diego, U.S., the, R. of, California and reserved, A. rights (no date) Endometriosis treatment. Available at: https://health.ucsd.edu/specialties/obgyn/endometriosis/Pages/default.aspx (Accessed: 13 January 2017).

6″Endometriosis”. Healthdirect.Gov.Au, 2019, https://www.healthdirect.gov.au/endometriosis.

7″Endometriosis – Healthfinder.Gov”. Healthfinder.Gov, 2019, https://healthfinder.gov/FindServices/SearchContext.aspx?topic=286.

8″Endometriosis | Endo | Medlineplus”. Medlineplus.Gov, 2019, https://medlineplus.gov/endometriosis.html.

9″Endometriosis | Health Encyclopedia | Floridahealthfinder.Gov”. Floridahealthfinder.Gov, 2019, http://www.floridahealthfinder.gov/healthencyclopedia/health%20illustrated%20encyclopedia/1/000915.aspx.

10″Endometriosis-associated Maternal Pregnancy Complications – Case Report and Literature Review.” National Center for Biotechnology Information. Web. <http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4999325/>.

11″Endometriosis | Obstetrics And Gynecology | Michigan Medicine | University Of Michigan”. Medicine.Umich.Edu, 2019, https://medicine.umich.edu/dept/obgyn/patient-care-services/womens-health-library/endometriosis.

12″Endometriosis | Stony Brook Medicine”. Stonybrookmedicine.Edu, 2019, https://www.stonybrookmedicine.edu/stonybrookgynob/services/endometriosis.

13″Endometriosis | Womenshealth.Gov”. Womenshealth.Gov, 2019, https://www.womenshealth.gov/a-z-topics/endometriosis.

14″Endometriosis Increases Risk Of Complications During Pregnancy & Delivery – Philadelphia University + Thomas Jefferson University”. Jefferson.Edu, 2019, https://www.jefferson.edu/university/news/2017/09/18/endometriosis-and-pregnancy-complications.html.

15″Endometriosis Trial: Study Of NBI-56418 In Endometriosis – Full Text View – Clinicaltrials.Gov”. Clinicaltrials.Gov, 2019, https://clinicaltrials.gov/ct2/show/NCT00109512.

16″Endometriosis: What Is Endometriosis? Endometriosis Symptoms, Treatment, Diagnosis – UCLA”. Obgyn.Ucla.Edu, 2019, http://obgyn.ucla.edu/endometriosis.

17pmhdev (no date) ‘Endometriosis – national library of medicine – PubMed health’.

18Rogers, Peter A W, et al. “Defining Future Directions for Endometriosis Research: Workshop Report from the 2011 World Congress of Endometriosis In Montpellier, France.” Reproductive Sciences (Thousand Oaks, Calif.), SAGE Publications, May 2013, www.ncbi.nlm.nih.gov/pmc/articles/PMC3635070/. 

19“Seeking New Treatments for Endometriosis.” Eunice Kennedy Shriver National Institute of Child Health and Human Development, U.S. Department of Health and Human Services, www.nichd.nih.gov/newsroom/resources/spotlight/041014-endometriosis-awareness. 

20″Slucare Center For Endometriosis : SLU”. Slucare.Edu, 2019, https://www.slucare.edu/ob-gyn/center-for-endometriosis/index.php.

21“The University of Texas Rio Grande Valley.” University of Texas Rio Grande Valley, www.utrgv.edu/en-us/.

22″UNC Center For Endometriosis – UNC Department Of Obstetrics & Gynecology”. UNC Department Of Obstetrics & Gynecology, 2019, https://www.med.unc.edu/obgyn/migs/our-services/unc-center-for-endometriosis/.

23Washington (2017) Fertility & reproductive medicine center. Available at: https://fertility.wustl.edu/getting-started-infertility/infertility-factors/endometriosis/ (Accessed: 13 January 2017).

24What are the treatments for endometriosis? (2013) Available at: https://www.nichd.nih.gov/health/topics/endometri/conditioninfo/Pages/treatment.aspx (Accessed: 13 January 2017).

25What is endometriosis? (2017) Available at: https://www.womenshealth.gov/a-z-topics/endometriosis (Accessed: 13 January 2017).

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