Endometriosis – Why suffer silently? Let’s Track and Talk
Tracey Fischer used to have extremely painful periods since the age of 11. She writes in her blog “from age 11 until 24, doctor after doctor wrote off my fainting episodes, writhing pain that gave me cold sweats and spasms, and the overall necessity to schedule my life around a normal bodily function as “all in my head.” At 24 that she was told that she has an incurable illness called endometriosis.
What is endometriosis?
Tissue lining the inside of a uterus is called Endometrium. Endometriosis is a condition where this tissue starts to grow outside the uterus in and around other organs such as ovaries, the fallopian tubes and the pelvic floor. This abnormal growth of tissues leads to symptoms such as painful periods (dysmenorrhea), GI abnormalities like bloating and cramps – enhanced around the time of menstruation, painful intercourse, painful bowel movements, infertility and neuropathy.
Daily lives of an estimated 176 million women in the world are affected by endometriosis pain. Too often, the diagnosis of endometriosis is missed and women have to suffer in pain silently. Professor Stacey Missmer (Boston Centre for Endometriosis, USA), says “We need to shout from the rooftops that pelvic pain matters!”
What causes it?
Doctors are not sure why the endometrial tissue starts to grow in places it is not supposed to grow, but they provide several theories explaining the cause of endometriosis:
- You may inherit some of the endometrial cells from your mother or grandmother, which may be the cause of your endometriosis. So heredity plays a role.
- Another theory suggests the involvement of a faulty immune system, which fails to get rid of the cells that are misplaced as a result of the menstrual blood containing endometrial cells flowing back through the fallopian tubes into the pelvic cavity. This back-flow of menstrual blood allows the endometrial cells to attach to organs outside the uterus, where they flourish and bleed overtime.
How is it diagnosed?
There are no specific blood tests to diagnose endometriosis. Your doctor may perform several tests like:
Pelvic exam: Your doctor may examine your pelvic area to check for any cysts in and around the uterus. However, small area of abnormal endometrial tissues may be missed unless there is cyst formation.
Ultrasound: This method again is not fool proof in diagnosing endometriosis unless cysts have formed due to endometriosis.
Laparoscopy: Your doctor may look inside your abdomen with the help of a laparoscope, an instrument that can spot any endometrial adhesions present around the uterus. This method can diagnose the extent, size and exact location of endometrial outgrowths in your pelvic area and hence help choose best treatment options.
Careful recording of symptoms and use of over the counter painkillers are usually the first steps in endometriosis management. However, surgical removal of endometriosis is considered the “gold” standard for treatment.
Various kinds of surgeries are available for removing adhesions from around the organs outside of the uterus, but laparoscopic surgery is the most advanced treatment for endometriosis. Laparoscopic surgery removes the endometriomas, including the scar tissue and the adhesions.
Dr. Tamer Seckin, a board-certified gynecologist and internationally renowned specialist in minimally invasive laparoscopic endometriosis excision surgery, believes that laser surgery, which many doctors choose to use, is far less effective because it only “burns off the top layer of endometrial tissue”, allowing the abnormal tissues below to grow back quickly. Laparoscopic excision surgery offers permanent removal of abnormal outgrowths through a small incision in your abdomen, and hence is an effective and less invasive option offering maximum pain relief and maximum results.
Other treatments include Myomectomy – where each uterine fibroids are removed through a large abdominal incision; and Hysterectomy – where the uterus is removed altogether.
Professor Christian Becker (University of Oxford, United Kingdom) says “Endometriosis treatment is too often unsuccessful or has too many side effects. We need to rethink our classification and better distinguish different forms of endometriosis to individualize diagnostics and therapy. Only large-scale studies with standardized data/sample collection will bring us closer to reaching this goal.”
Although acetaminophen and nonsteroidal anti-inflammatory drugs (NSAIDs) are prescribed to help relieve pain and cramping, endometrisosis pain differs from other kinds of pain in that it characteristically does not respond well to analgesics and birth control pills.
Your doctor may prescribe you oral contraceptive pills to make your menstrual periods shorter and lighter so as to ease the pain of endometriosis, but the symptoms may return after you discontinue the pills.
Dr John Dulemba (The Women’s Center, Denton, USA) says “Women’s pain and suffering has been ignored for decades. It is time to acknowledge that endometriosis should be treated early and aggressively, and not to wait until other organs are involved, and it is too difficult to remove.”
Endometriosis tracking apps
Tracking your pattern of symptoms may help your doctor identify where and how bad your endometriosis is.
There are several apps that you can use to track your endometriosis such as: Phendo, Endometriosis Diary, Flutter – Period & Ovulation Tracker, Journal and Endometriosis Self Diagnosis.
Phendo, is an observational study app based on Apple’s #researchkit, that aims to establish a catalog of the signs and symptoms of endometriosis as experienced by you, at the same time helping you manage your disease.
Endometriosis Diary, allows you to use triggers, like day of month and week and diet to predict and manage your Endometriosis, and Flutter, assists in self-diagnosis, give tips, helps you learn more about endometriosis, and helps you regulate your period.
So, why suffer the pain of endometriosis silently? Let’s track and talk about our symptoms to help our doctors as well as other women in the same boat.