ENDOMETRIOSIS FOUNDATION
OF HOUSTON
What is Endometriosis?
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Endometriosis is defined as the presence of endometrial-like tissue outside of the uterus. Although endometriotic tissue may somewhat resemble endometrium, the lining of the uterus, the two tissues are distinctly different. Endometriotic lesions cause a breakdown in surrounding tissue, resulting in bleeding and the formation of scar tissue. This creates an inflammatory response with increasingly wide-spread symptoms.
The most common symptom is pelvic pain that puts life on hold around or during a person’s period. According to endometriosis specialist Dr. John Dulemba, “It’s not a malignancy. It’s not cancer, but the symptoms it produces are so life-interfering that it feels like a life- threatening problem. They can’t function.”
Although endometriosis typically forms on the pelvic and abdominal organs, it can be found anywhere in the body. It progresses over time. Therefore, early intervention is key. Surgery is currently the only way to confirm a diagnosis of endometriosis. Unfortunately, it can take an average of 8 doctors across 10 years to receive a correct diagnosis. Many factors contribute to diagnostic delays: the idea that painful periods are normal; difficulty discussing periods with a doctor; societal stigma; variable symptoms; and misdiagnoses. Those with a close relative who suffered from endo are 7X more likely to have it.
Nearly 200 Million people suffer from endometriosis.
Endometriosis affects an estimated 1 in 10 people assigned female at birth of “reproductive age,” but this is not merely a reproductive disease. Symptoms of endometriosis may begin before puberty and persist through menopause. Endometriosis can be found in those without a uterus or ovaries.
It can be found in trans men. In rare cases, it has been found in men.
It has even been found in fetuses.
Endometriosis places an economic toll on the United States of $119 Billion each year in lost wages, productivity, and health care costs.
Symptoms
The most common symptom of endometriosis is severe, often debilitating, pelvic and abdominal pain, with or without a period. While we often think of intensely painful periods with excessive bleeding as the hallmark of endometriosis, other common symptoms include:
• pain with sex
• pain with defecation
• urinary pain
• backaches
• abdominal bloating (aka endo belly)
• severe fatigue
• pain with exercise
• hip and leg pain
• nausea
• constipation
• headaches/migraines
• diarrhea; and
• infertility.
If you experience these symptoms and they interfere with your normal, daily life, it may be time to seek help from a specialist who deals with endometriosis on a daily basis.
How is a diagnosis made?
The only way that the diagnosis of endometriosis can be made is to undergo a laparoscopy and have a biopsy (tissue sample) taken.
A laparoscopy is a surgical procedure, performed under general anaesthetic where a thin telescope is placed through a small incision in the belly button. This allows your doctor to see inside your abdomen and assess the organs of the pelvis and abdomen. A laparoscopy can magnify the tissues, allowing even small amounts of disease to be seen. Tissue that is thought to contain endometriosis should be removed at the time of the laparoscopy and sent to the pathologist to be viewed under a microscope to confirm the diagnosis.
Sometimes the diagnosis is suggested without having a laparoscopy. This may be due to the fact that your doctor can feel tissues in your pelvis that are affected by endometriosis, can see an endometriosis cyst affecting your ovary or other pelvic organ, or very occasionally see the endometriosis if it has grown through the vagina. Remember that the only way to be 100% certain of the diagnosis is to have a laparoscopy and biopsy.
One of the challenges in diagnosing endometriosis is a doctor’s ability to recognize the disease. Although most gynecologists are only familiar with a few appearances of endometriosis, such as the classic “powder burn”, endometriosis can take on a wide array of colors and appearances: black, red, brown, clear or bubble-like, yellow, white, and vascular, to name a few. The easy-to-spot powder burn is one of the least painful types of lesions. Endometriotic lesions with a pale, clear, or vascular appearance are typically the most painful. These are also the easiest to miss by an untrained eye.
4 Stages
Endometriosis is often classified as mild, moderate or severe or recorded in surgical notes as stage I - IV.
Mild or stage I endometriosis appears as small patches or surface lesions scattered around the pelvic cavity.
Moderate or stage II or III endometriosis appears as larger widespread disease starting to infiltrate tissue and often found on the ovaries, uterosacral ligaments and Pouch of Douglas. Sometimes there is also significant scarring and adhesions.
Severe or stage IV endometriosis affects most of the pelvic organs, often with distortion of the anatomy and adhesions.
These stages of endometriosis provide a useful tool for discussing damage to internal structures and fertility but have limitations as well. The extent of endometriosis is not generally related to the symptoms experienced. There is no reliable correlation between stage and pain. Indeed, many women with a lower stage experience more pain that those diagnosed with a higher stage. Location and type of endometriosis lesions play a significant role in this.