The World Health Organization lists endometriosis as one of the top twenty most painful conditions that exist in the world affecting women daily. It is also one of the most misunderstood, misdiagnosed, under-discussed conditions around. Many women are gaslit or ignored for years before any real diagnosis occurs, or treatment begins. And by this time, the damage has most often been done.
The incredibly painful condition of endometriosis occurs when tissue that typically lines the insides of the uterus, the endometrium, spreads and grows outside of the uterus around the body. This conditions most commonly grows on and affects the Fallopian tubes, ovaries, and any and all tissues lining your pelvic region and pelvic organs. It can also spread through the body, and has been found on the intestines, lungs diaphragm, heart, and brain.
Because these cells come from the uterine lining, they continue to carry out the same acts throughout the body: thicken, break down, bleed, and grow with each hormone or menstrual cycle. These cells cause abnormal bleeding throughout the body, at every implantation. These cells cannot freely escape the body as they do with a normal menstrual cycle, so instead they spread around the inside of the body. Tissues surrounding Endo lesions and implants can become angry and irritated, developing into adhesions and scar tissue. These adhesions and scar tissue can then become stuck to each other, the abdominal wall, organs, and surrounding areas causing further, permanent damage, pain, and other conditions. Fertility problems are also closely linked to endometriosis.
Endometriosis Symptoms
The most defining and first noted symptom is often severe pelvic pain around the time of your cycle, or a more constant pain if no uterus is present. Many women work through period cramps and pain, but women who also have endo describe their period pain as beyond bearable, usually worsening over the years.
These are the typical signs and symptoms of endometriosis as outlined from the National Institute of Health and other major endometriosis education sites.
Excessive bleeding. You may experience occasional heavy periods or bleeding between periods, which is called menometrorrhagia.
Infertility. Endometriosis is first diagnosed in some women who are seeking treatment for infertility and linked as a possible reason why conception does not happen.
Other symptoms. You may also experience fatigue, diarrhea, constipation, bloating or nausea, especially during and around your menstrual periods.
Painful periods or dysmenorrhea. Pelvic pain & cramping may begin before your period and extend several days into your period. You may also have lower back and abdominal pain.
Pain with intercourse. Pain at any time during, after or before sex is common with endometriosis.
Pain with bowel movements or urination. You are most likely to experience these symptoms during your period. (NIH, Endo What, endometriosis.org)
The level of the pain experienced with endometriosis does not equate to the level or extent of the condition. Women who have a mild form of this condition experience extreme pain, and those with severe endometriosis sometimes experience no pain. Endometriosis can be mistaken for many other conditions that have pelvic pain as a symptom, like pelvic inflammatory disease, or PID. Even ovarian cysts can mimic the same symptoms, as can irritable bowel syndrome. Which is why it is important to be seen and evaluated by a healthcare professional.
Endometriosis Triggers & Causes
While there is no direct understanding why endometriosis occurs, there are many suggested reasons why it can be triggered or worsen. Some of those reasons might be:
Surgical scar implantation. After surgery, like a hysterectomy, abdominal surgery, or cesarean section, endometrial cells may attach to a surgical incision causing severe scarring and adhesions.
Endometrial cells transport. The blood vessels or tissue fluid from the lymphatic system may transport endometrial cells to other parts of the body.
Immune system disorder. It is possible that a problem with the immune system may make the body unable to recognize and destroy endometrial tissue that is growing outside of the uterus.
Retrograde menstruation. In retrograde menstruation, menstrual blood containing endometrial cells flows back through the Fallopian tubes and into the pelvic cavity instead of out of the body. These displaced endometrial cells stick to the pelvic walls and surfaces of pelvic organs, where they grow and continue to thicken and bleed over the course of each menstrual cycle.
Transformation of peritoneal cells. In what is known as the “induction theory,” experts propose that hormones or immune factors promote transformation of peritoneal cells, which are cells that line the inner side of your abdomen, into endometrial cells.
Embryonic cell transformation. Hormones such as estrogen may transform embryonic cells, which are cells in the earliest stages of development, into endometrial cell implants during puberty. (NIH, Endo What, endometriosis.org)
Increasing Risks for Endometriosis
There are multiple factors that could play a role in your development of endometriosis. They are:
- Low body mass index
- Alcohol consumption
- One or more relatives (female, maternal relatives) with endometriosis
- Any medical condition that prevents the normal passage of menstrual flow out of the body
- Uterine abnormalities
- Never giving birth
- Starting your period at an early age
- Going through menopause at an older age
- Short menstrual cycles
- Having higher levels of estrogen in your body or a greater lifetime exposure to estrogen your body produces
The condition of endometriosis usually develops several years after the beginning of menstruation. The signs and symptoms of endometriosis can suddenly and temporarily disappear during pregnancy, or during extreme illness, and change again with menopause- unless you are taking estrogen. (NIH, Endo What, endometriosis.org)
Diagnosing Endometriosis
When you visit your doctor, they will ask for your health history, describing the pains you are experiencing, and discuss your menstrual cycle. With the pelvic pain, your doctor might ask you for all your other symptoms and ailments, including the specific locations of the pain you are having. Next, they may order any of these tests to look for physical signs of endometriosis:
-Ultrasound. This test uses high-frequency sound waves to create images of the inside of your body. To capture the images, a device called a transducer is either pressed against your abdomen or inserted into your vagina (trans vaginal ultrasound). Both types of ultrasounds may be done to get the best view of your reproductive organs. Ultrasound imaging won’t definitively tell your doctor whether you have endometriosis, but it can identify cysts associated with endometriosis (endometriomas).
–Magnetic resonance imaging or MRI. An MRI is an exam that uses a magnetic field and radio waves to create detailed images of the organs and tissues within your body. For some women, an MRI helps with surgical planning, giving your surgeon detailed information about the location and size of endometrial implants.
–Pelvic exam. During a pelvic exam, your doctor manually feels or palpates areas in your pelvis for abnormalities, such as cysts on your reproductive organs or scars behind your uterus. It is not possible to feel small areas of endometriosis, unless they have caused a cyst to form.
–Laparoscopy. In some cases, your doctor may refer you to a surgeon for a procedure (laparoscopy) that allows the surgeon to view inside your abdomen. While you’re under general anesthesia, your surgeon makes a tiny incision near your navel and inserts a slender viewing instrument (laparoscope), looking for signs of endometrial tissue outside the uterus. (NIH, Endo What, endometriosis.org)
A laparoscopy can provide information about the location, extent, and size of the endometrial implants to help determine the best treatment options. Your surgeon may take a tissue sample or biopsy for further testing.
Complications from Endometriosis
Some of the main complications that most struggle with are issues with conceiving and fertility. One-third to one-half of women who live with endometriosis will have difficulty getting pregnant, and some will need medical intervention. Because this condition can block and obstruct the Fallopian tubes, this inhibits the sperm from being able to proceed through the tubes to fertilize the ovum. Even with this condition, women with mild to moderate endometriosis can still conceive and carry a pregnancy to term. In severe cases, women are encouraged not to wait to start a family if that is their desire with endometriosis because, with time, this condition only worsens. (endometriosis.org, Dr. Orbach)
Another complication from this condition is the heightened risk of ovarian cancer for those with endometriosis. Certain cases of cervical cancer and adenocarcinoma have been linked to the developing and worsening condition. Whenever cells are stressed, and damage has been caused, this can signal the cells to reproduce and form into precancerous cells, thus leading to cancer.
If you suspect that you might be dealing with Endo, contact your healthcare team to make an appointment to begin treatment and testing. Once there is a proper diagnosis and verification of Endo, you can determine which treatment plans might be best for your situation, or if surgical intervention is best.
Citations:
American Cancer Society
Endo What
Endometriosis.org
National Institute of Health
Dr. Iris Orbach
Note: This article is for informational purposes only with information compiled from numerous major health sources listed in the citations. Please consult your medical team for your situation or concerns.