— Could you be suffering from this painful disease?
by Diana Swift, Contributing Writer, MedPage Today
Reviewed By Valerie A. Flores, MD, assistant professor, Division of Reproductive Endocrinology & Infertility, Department of Obstetrics, Gynecology & Reproductive Sciences, Yale School of Medicine – Yale New Haven Hospital, New Haven, Connecticut
Last Updated February 01, 2022
Endometriosis is a hormone-related disorder that most often affects the pelvic region. An estimated 10% of U.S. girls and women of reproductive age suffer from this painful, under-diagnosed condition.
While endometriosis is generally seen as a disease of adult women, who may not be diagnosed until they are unable to get pregnant and then go for fertility testing, the condition has been found in girls as young as 10.
The disease is likely driven by a combination of factors, including genetics, estrogen, and the immune system. Lifestyle and environmental factors may also have an impact.
Normal menstruation should not involve long-lasting excruciating pain and/or progressively worsening pain as in endometriosis, noted Margaret Nachtigall, MD, of NYU Langone Health in New York City. “It is certainly reasonable to seek medical attention, especially because there is often a good solution such as a continuous birth control pill, which might be able to alleviate the pain, as well as other good treatment options.”
What Happens in Endometriosis?
The disease develops when tissue from the lining of the womb – i.e., the endometrium – escapes from the uterus through the fallopian tubes into the pelvic cavity and continues to grow there.
Implants from this “retrograde menstruation” may then attach to the ovaries, fallopian tubes, or surface of the uterus, as well as the intestines, bladder, rectum, or space behind the uterus.
Unlike normal menstrual tissue, which leaves the body during a woman’s period, this “ectopic tissue” is trapped in the pelvis with no way to exit. Under the influence of hormones regulating the monthly cycle, this ectopic tissue expands and swells, causing bloating, inflammation, scarring, and pain, which is usually more severe and longer lasting than that of typical monthly cramps.
Some affected women, however, have no pain and are diagnosed only during investigation for other diseases or when being evaluated for causes of infertility.
More recently, another source of these external deposits has been identified: immature endometrial stem cells produced in bone marrow, which travel to distant sites like the brain or lungs and grow into endometrial cells, causing inflammation, scarring, and pain wherever they take up residence.
The inflammation may be linked to the way a woman’s immune system functions, since some sufferers have other immune conditions such as asthma, eczema, and other allergies or intolerances. Other explanations are the overproduction of estrogen and fatty hormone-like compounds called prostaglandins, which can cause inflammation and muscle cramping.
How Does Endometriosis Cause Infertility?
The pain of endometriosis can interfere with day-to-day activities as well as fertility, since the displaced tissue can cause inflammation, affecting the eggs, or adhesions, making it harder for the sperm and egg to unite. Scarring may block the ovaries and fallopian tubes, and the inflammation can damage egg and trigger changes in the uterine lining that make it less receptive to implantation of an embryo.
About 30% to 40% of women with endometriosis become infertile. In more advanced disease, endometriomas — cysts formed by endometrial tissue growing in the ovaries — may develop, which can negatively impact the ability to become pregnant.
Early Diagnosis of Endometriosis
It is important to get diagnosed early before the disease progresses. The severity of pain, however, does not always indicate how far the endometriosis extends or what stage of growth it has reached.
The following are typical symptoms and/or risk factors of endometriosis:
- Pain in the lower abdomen around the time of menstruation and usually with severe cramps
- Painful urination or bowel movements or rectal bleeding during menstruation/cyclically
- Pain in the lower abdomen or back at other times, usually cyclic
- Pain during sexual intercourse
- Periods that last more than 7 days
- Shorter than usual intervals between periods
- Fatigue
- Gastrointestinal problems such as diarrhea, constipation, and nausea during menses/cyclically
If you have one of more of these symptoms, ask your doctor about getting investigated for endometriosis.
Sometimes surgery may be needed to help with treatment of endometriosis-associated pain.
Other Risk Factors for Endometriosis
- Having a close relative with endometriosis, which suggests an inherited predisposition
- Starting your periods before age 12
- Intervals between periods of less than 27 days, leading to more periods per year, with greater exposure to ovarian hormones
- Anatomical abnormalities in the uterus
- Allergic conditions such as asthma or eczema
- Asian race
- Heavy consumption of red meat
Overcoming Reluctance to Seek Help
Gender-based misconceptions may cause some girls and women to brush off their symptoms as normal and avoid seeking help. No woman who suspects she might have endometriosis should allow female stereotyping to condemn her to decades of pain and possible infertility, Nachtigall stressed. “If an individual’s physician is not going to evaluate for endometriosis, there are many excellent physicians who do regularly see and take care of patients for endometriosis.”
Ask for a referral – or act as your own advocate for getting tested or find someone to advocate for you. The Endometriosis Association can help you find the information and support you need and connect you with other women who suffer from the condition.
MedPage Today‘s “Medical Journeys” is a set of clinical resources reviewed by doctors, meant for physicians and other healthcare professionals as well as the patients they serve. Each episode of this 12-part journey through a disease state contains both a physician guide and a downloadable/printable patient resource. “Medical Journeys” chart a path each step of the way for physicians and patients and provide continual resources and support, as the caregiver team navigates the course of a disease.