My Mom’s Battle with Endometriosis: A Personal Interview
I was able to interview my mom, Edith Salas, who experienced endometriosis starting as a 15 year old until her hysterectomy in her forties. She wants to share her long story of living with her severe case of endometriosis.
What is Endometriosis?
Endometriosis is a disease that occurs when tissue similar to the lining of the uterus grows outside the uterus. This leads to inflammation and scar tissue forming in the pelvic region and (rarely) elsewhere in the body.
Symptoms
It's important to note that the severity of the symptoms does not always correlate with the extent of the disease. Some women with severe endometriosis may have mild symptoms, while others with a mild form of the disease may experience severe symptoms. This also means that this is not easily identifiable and is hard to diagnose. The symptoms my mom had was pain in pevlic area, bloating, painful periods, and inflammation. Although, these are the most common symptoms:
severe pain in pelvis (the most common symptom)
most noticable during a period, during/after sex, and when urinating or defecating
chronic pelvic pain
heavy bleeding during periods or between periods
trouble getting pregnant
bloating or nausea
fatigue
depression or anxiety
Diagnosis
As mentioned, endometriosis is difficult to diagnose. Due to this, physicians will most likely begin with physical examination and imaging tests. Although, laparoscopy is the only way to for sure know the patient has it. During this procedure, a surgeon makes small incisions in the abdomen and inserts a laparoscope (a thin tube with a camera) to look directly at the pelvic organs. This allows the surgeon to see endometrial implants, determine their size and location, and perform a biopsy if needed to be examined under a microscope to confirm the diagnosis of endometriosis.
The way doctors were able to find out my mom had this conditon was during a labroscopy surgery because at the time she had ovarian cysts.
Causes
Several theories attempt to explain why endometriosis occurs, as there are many different factors but not for sure the answer.
Retrograde Menstruation: One of the most widely accepted theories is retrograde menstruation. This theory suggests that during menstruation, some of the menstrual blood flows backward through the fallopian tubes into the pelvic cavity instead of leaving the body. The endometrial cells in this blood then implant on the pelvic organs, leading to endometriosis. However, retrograde menstruation alone cannot explain all cases, as many women experience retrograde menstruation without developing endometriosis.
Embryonic Cell Transformation:
Another theory proposes that embryonic cells (cells present in a developing embryo) transform into endometrial-like cells during puberty. These cells can then grow outside the uterus, leading to endometriosis. This theory helps explain cases where endometriosis appears in unusual locations, such as the lungs or brain.
Immune System Dysfunction:
The immune system plays a crucial role in recognizing and eliminating abnormal cells. In women with endometriosis, the immune system might fail to detect and destroy the ectopic endometrial cells. Additionally, these women might have higher levels of certain immune factors that promote inflammation, contributing to the pain and scarring associated with the condition.
Genetic Factors:
Genetics also appears to play a significant role in endometriosis. Studies have shown that women with a family history of endometriosis are more likely to develop the condition. Specific genetic mutations and variations have been identified that might increase susceptibility to endometriosis by affecting how cells respond to hormonal and environmental signals.
Hormonal Influences:
Hormones, particularly estrogen, play a vital role in the development and progression of endometriosis. Estrogen promotes the growth and maintenance of endometrial tissue. Women with endometriosis often have higher levels of estrogen or increased sensitivity to the hormone, leading to the abnormal growth of endometrial-like tissue outside the uterus.
Treatments
Pharmacological
Currently, there is no specific drig that could inhibit the progress of the disease rather than drugs used to alleviate the symptoms and increase fertility rates. My mom was on the hormone suppression drug lupron (which stopped ovulation) and birth control.
Combined hormonal contraceptives
exert their effect by inhibiting follicular development, lowering the levels of LH and FSH, and leading to decidualization and atrophy of the human endometrium
Progestins
demonstrate their therapeutic action by inhibiting ovulation and creating a hypoestrogenic milieu, and by binding directly to the progesterone receptors in the endometrium, they cause decidualization and atrophy of endometriotic implants
can also relieve symptoms by decreasing peritoneal inflammation
Non-steroidal anti-inflammatory drugs
effective against endometriosis-related pain and are supported as first-line medical therapy due to their easy accessibility as over-the-counter drugs and the low adverse-effect profile.
Surgical
Laparoscopy: Minimally invasive surgery where endometrial tissue is removed or destroyed. This is often used to diagnose and treat endometriosis simultaneously.
Laparotomy: A more extensive abdominal surgery, which may be necessary for severe cases of endometriosis.
Hysterectomy with Oophorectomy: Removal of the uterus (hysterectomy) and possibly the ovaries (oophorectomy). This is considered a last resort for women with severe endometriosis who do not respond to other treatments and do not wish to conceive in the future. My mom had this procedure done as this was her last resort.
Conclusion
While the exact cause of endometriosis remains unknown, research has provided valuable insights into the mechanisms that might contribute to its development. A combination of retrograde menstruation, genetic factors, immune system dysfunction, hormonal influences, and cellular mechanisms likely plays a role in the onset and progression of this condition. Continued research is essential to unravel the complexities of endometriosis, paving the way for more effective treatments and, ultimately, a cure. Edith Salas says “I do not wish on anyone as it is extremly painful and confusing. For anyone that believes they have endometriosis talk with your doctor and try to live a healthy lifestyle.”
Understanding the science behind endometriosis not only helps in managing the condition better but also brings hope to millions of women suffering from this enigmatic and often debilitating disease.
World Health Organization. "Endometriosis."
National Library of Medicine. “Endometriosis”
