Endometriosis: A Painful Puzzle

While extremely painful menstrual periods are the most common symptom, some women may experience only mild pain, but occasionally some women may have no pain at all. Some of the most common symptoms include but are not limited to pelvic pain during and/or unrelated to menstrual periods, painful intercourse, infertility, and pain with bowel movements or urination, particularly during a period. Some women may also experience fatigue, bloating, and irregular periods. To make diagnosis even harder some women may perceive no symptoms at all. 

According to the Endometriosis Foundation Association, 1 in 10 women are affected by endometriosis. There is no set time for it to develop as it can start as early as the first period, but it is most commonly diagnosed in women in their 30s-40s. For women taking oral contraceptives the first noticeable symptoms typically appear after they stop taking birth control pills. Endometriosis can improve in menopause if hormone treatments are avoided. 

According to the Office on Women’s Health in the US Department of Health & Human Services, endometriosis may be more common in women who have never had children, have menstrual periods that last longer than 7 days, have a family history of endometriosis, women who have short menstrual cycles, and in women who have been diagnosed with a health problem that blocks the normal flow of menstrual blood from their body during a period. 

The exact causes of endometriosis have yet to be pinpointed but it is typically accepted as being explained as being caused by 3 reasons: a retrograde in menstrual flow, genetics, and hormone levels being off. Retrograde menstrual flow happens when menstrual lining tissue backflows through the fallopian tubes and gets into other places then attach to and invades those places; these cells are naturally cleared away in most women, but those with endometriosis have an exaggerated immune response that allows these cells to implant and grow. Genetics kick in here too, it’s true that it can run in the family, but if you are experiencing painful periods it may be worth getting checked out to see if you are carrying on the family legacy. Estrogen stimulates endometriosis growth, when levels are low endometriosis implants will typically regress and symptoms will often improve or even stop. 

The most definitive way to diagnose this condition is by surgery with a biopsy of endometriosis implants. Laparoscopy is the most common method as it allows the surgeon to use a thin tube with a camera on its end to examine the pelvis and abdomen while taking tissue samples and/or removing endometriosis tissues. Typically the patient is given general anesthesia for this procedure and the tube is inserted via a small incision near the naval and several other small incisions are used as well. Ultrasound and MRIs may also be used for diagnosis, to identify ovarian cysts associated with endometriosis, or to identify larger or deeply invasive lesions such as those that may have invaded the bowel, bladder, or uterine ligaments. However, the most common form of endometriosis is superficial implants which are generally too small to be detected by current MRI or ultrasound techniques. 

Endometriosis can take up to 10 years to accurately diagnose, it is multifactorial, and there is much about the disease that is not fully understood, given how widespread it is the disease deserves much more attention. Early diagnosis can be difficult with this disease, it can be like solving a puzzle and it is easy to misdiagnose because the symptoms can be associated with other illnesses. Bowel pain and bloating may not be irritable bowel symptoms, especially if during a painful period. 

But wait it gets even better….

We are learning that endometriosis is a systemic and chronic condition, those with the disease have a higher probability of also having the following conditions: 

Additional chronic pain and fatigue conditions include but are not limited to migraine headache, irritable bowel syndrome, bladder pain syndrome, vulvodynia, chronic fatigue syndrome, and fibromyalgia. 

Chronic pain can also be associated with hypersensitivity to pain due to changes in the way that the brain and spinal cord interpret and relay pain; those who experience this often have more severe pain and/or pain that persists even after the underlying condition has been fully treated.

Autoimmune diseases such as lupus, hypothyroidism, and multiple sclerosis.  And to round out the additional list, those with endometriosis are more likely to have chemical sensitivities, allergies, and asthma. 

Currently, there is no cure for endometriosis, the primary treatments are medications to suppress it and surgery to remove it. Both options may help but neither is a cure, and each option has benefits as well as risks. Medications include but are not limited to birth control pills, birth control shots, hormonal intrauterine devices, and anti-inflammatory pain medications. Surgery is generally for those with symptoms that have not improved after medication, those not able to take medications, those trying to get pregnant, or those who have large endometriosis cysts or deep endometriosis that is causing stricture of blockage. After surgery, it is advised to remain on hormone-suppressive medication to keep the lesions from regrowing. However, despite best efforts, the tissue often grows back, but post-surgery hormone treatment can lower the risk of recurrent endometriosis. When all other treatments have failed laparoscopic surgery is recommended to perform a hysterectomy, but even this is not a guaranteed cure. 

Women who have pelvic pain whether or not it is painful menstrual periods or daily pelvic pain if it is severe enough that it is interfering with their quality of life, preventing usual activities, keeping them home from work/school, or enjoying time with friends/family should consider this to be abnormal, and consult their physician who may even refer you to an endometriosis specialist for evaluation.