For more than 27 years, I lived undiagnosed with Pure O, a form of OCD that is associated with horrible intrusive thoughts.
A woman with undiagnosed endometriosis is a woman constantly Googling things. Like so many tweens, teens, and twenty-something females with this reproductive disease, which is still seldom diagnosed in 2016, I went to no less than a million doctors seeking an answer as to why I felt so sick so often, and waited well over a decade before even hearing the word "endometriosis." The crazy and frustrating thing is many of the doctors I saw did uncover symptoms of endometriosis with their exams and tests, they just didn't see their findings through to the end: to the cause of the symptoms and an accurate diagnosis, which was needed for effective treatment.
As I got worse and different doctors arrived at more and more confusing conclusions ("you have Celiac Disease no matter what the test says" , "it's your thyroid even though your T4 is in the normal range" , "it's a rare autoimmune disease without a cure, so take this diet pill and stop eating dairy" , "it's the way you walk") I turned to the Internet to try to solve the riddle of my illness myself. Because endometriosis has been researched and discussed to such a dismal extent, I have yet to find an article online with a complete list of every symptom I experienced over the years. I'm writing this one now in hopes that other women with undiagnosed endometriosis will find this information and find it helpful.
Low Progesterone, High Estrogen
Beginning five years before my diagnosis of endometriosis and my surgery to remove it, I sought help from medical doctors who also worked as naturopaths. For whatever reason they were the first to test my hormone levels—something doctors at medical institutions like Cornell and Kaiser did not do for me. The naturopaths discovered I had low progesterone and high estrogen levels. They put me on bioidentical progesterone cream, which did help me feel better, but was not enough to be the long-term solution on its own.
What the doctors didn't get to was that endometriosis is an estrogen-dependent disease, and high levels of estrogen and low levels of progesterone were a huge indicator of me having endometriosis. Not only do these abnormal endometrial cells growths thrive on estrogen, eating it up like fertilizer, they also create their own estrogen, making estrogen dominance an endometriosis red flag.
Hormone imbalance causes weight fluctuations. There were stretches of years that, no matter what diet or exercise routine I tried, I could not lose weight. In fact, I gained weight—that is, I gained fat, and, like, a lot of it—while training for and completing marathons and a half-Ironman. There were also stretches of years where I lost weight, even when I stopped exercising and started devouring fast food and ice cream almost daily. This type of extreme loss of control over my weight was a sign that something was really wrong. Estrogen dominance appears externally as weight gain and a dramatic increase in cellulite.
Because my lifelong endometriosis-related complaints mostly had to do with digestive pain (more on that later), multiple doctors felt the need to test me for food allergies, especially the increasingly trendy "gluten intolerance." When I was at my absolute worst, I not only tested positive for gluten intolerance, but also exhibited an off-the-charts intolerance for eggs (whites and yolks), soy, and dairy. The commonality between these foods is, unsurprisingly, hormones. When endometriosis is infecting your body, environmental and man-made estrogens will make you feel worse. If estrogen dominance is already making you sick, adding more estrogen to your body is a recipe for disaster. My "food allergies" were really symptoms of my endometriosis—doctors just didn't carry the symptoms to a medical conclusion, thinking the food allergies alone were my problem.
My doctor and surgeon, Andrew Cook of the Vital Health Institute in Los Gatos, CA, has published a must-read book, The Endo Patient's Survival Guide, which includes helpful information on what to eat and what to avoid when you have endo. A few dietary takeaways include:
While gluten does not have hormones, a recent study found that a gluten-free diet significantly reduced pain in 75% of endo sufferers, making gluten intolerance a common symptom of endometriosis.
Animals raised on grain or soy diets, antibiotic injections, or in inhumane conditions (leading to an increase in stress hormones and inflammatory cytokines) store increased levels of estrogen in their fat, making women with endo who eat said animal products feel worse.
Information on whether or not soy is harmful or helpful to women with estrogen dominance has gone back and forth over the years, as soy contains phytoestrogens, or plant-based estrogens. New research suggests that phytoestrogens might actually be good for endo patients, as phytoestrogens hinder the body's natural estrogen from attaching to cells, but more research is needed to fully understand how soy affects women with estrogen dominance.
If you're experiencing any or all of these food intolerances, endometriosis may be to blame. While gluten intolerance has nearly become a foodie joke, the high number of women who feel better once they cut gluten from their diet may simply correlate to the high number of women who have endometriosis (1 in 10).
When I was at my worst, the level of magnesium in my body was so low that my doctor gave me IV's of magnesium twice a week for a month just to get me back within the healthy range. I then took magnesium powder every day for years, and still do fairly regularly. What my doctor didn't put together was that magnesium deficiency and estrogen dominance go hand in hand, making my low magnesium yet another sign of my underlying endometriosis. Estrogen eats up magnesium, depleting it from the body, so when you have estrogen dominance, you no longer have a healthy level of magnesium. Magnesium is also important for COMT function—the breakdown of estrogen—which means low magnesium makes it harder for the body eliminate estrogen, causing further magnesium deficiency. It's a vicious cycle, to say the least. Signs of magnesium deficiency include cold hands and feet, something I'd complained of nearly my whole life.
Imbalanced Reverse T3 Thyroid Hormone
Since I was in elementary school, doctors thought my health problems were caused by my thyroid. They tested it and tested it, but always arrived at the same conclusion: My thyroid was fine. As I got worse, two different doctors ran a more complete thyroid panel, and both found only one thing wrong with my thyroid: The ratio of reverse T3 hormone was off. While, like endometriosis, there is still very little known about T3 and reverse T3 thyroid hormones and how they affect the body, studies do show that it's thrown of balance by chronic illness and stress—like what you'd experience if you'd been living for most or all of your life with an undiagnosed reproductive disease.
Chronic Digestive Issues — Not IBS, Not Crohn's
Endometriosis grows in different places in different women. In can attach to the ovaries, the outside of the uterus, the pelvic wall, the appendix, the lungs, the brain, etc. A common, though not universal, site for endometriosis is the digestive system. Chronic, long-term constipation; multiple negative colonoscopies; and incomplete digestion of my food were my biggest health concerns through out most of my life. It wasn't until last year that I learned that these digestive issues could have been—and were—caused by problems with my reproductive organs. I had endometriosis growing on my colon as well as in the cul-de-sac, an area that touches the rectum, cervix, and uterosacral ligament.
My constipation and digestive issues were affected by my menstrual cycle. During ovulation, my endometriosis would fill with blood, and then bleed, causing the affected areas to fill with fluid. When the cul-de-sac filled with blood, it pressed on my rectum and cervix, causing intense pain and worsening my constipation. Many women with recto-vaginal endometriosis are told their digestive problems are either IBS or nothing, when in reality they have abnormal cell growths attacking their digestive organs.
Lower Back and Leg Pain
The endometriosis in my cul-de-sac also put pressure on my sciatic nerve, causing lower back and leg pain no physical therapist nor chiropractor could fix. Many women with endometriosis experience lower back and leg pain before and during menstruation.
Bladder Infections and UTI's
I had chronic bladder infections and UTI's from elementary through grad school. Most doctors told me I was getting them because my pants were too tight (what?). If you're guessing they found endometriosis on my bladder, you are correct.
Yeast Infections and Candida Overgrowth
In the two years before my long-overdue endo diagnosis and surgery, I was knocked down by what felt like strep throat or mono (both of which I've had) every few months. I was tested for each multiple times, but the tests always came back negative. Doctors had no idea what to do for me other than inject steroids into my neck so I could swallow. One doctor said, "That looks like a yeast overgrowth on the back of your throat," while another did stool tests and found I had yeast overgrowth. Her only advice to me was to stop eating yeast.
The real culprit was candida, a yeast overgrowth that is more likely to occur when, that's right, a person has estrogen dominance. Most of the western medical world will brush off the idea of candida overgrowth, telling you chronic yeast infections only occur in people with severely compromised immune systems—which exactly describes women with endometriosis. But because most doctors do not recognize endo, they will, in turn, not recognize candida overgrowth.
One year before my surgery, an endocrinologist in Midtown Manhattan diagnosed me with polycystic ovarian syndrome, or PCOS, based on my symptoms and influenced by the fact that she herself had it. In addition to everything listed above, I was also experiencing severe hair loss and cystic acne when I saw her. While her diagnosis wasn't incorrect, she, too, did not see her findings through to the end, as PCOS can be a symptom of endometriosis. Where there is one estrogen-dependent disease, there is often the other. She put me on Metformin for my PCOS, which caused me to start ovulating for the first time in perhaps forever. Ovulation irritated my endometriosis in a way it hadn't been irritated before. I was in the ER three times over the course of the next year, feeling more pain than ever. If this particular doctor had considered endometriosis when she diagnosed me with PCOS, she could have saved me a year of debilitating pain.
Hormone-related headaches are a common symptom of endometriosis for many women. While I didn't experience headaches growing up, I did get them more and more frequently in my 20's as I got worse.
Inconclusive Hospitalizations and E.R. Visits
Many women with endometriosis will find themselves in the E.R. with horrible stabbing pains in their abdomen before or during their period. They'll usually be discharged from the E.R. a few hours later when the stabbing stops, told they just had bad cramps. These types of "cramps" are absolutely not normal. If you have to go to the E.R. while on your period, as I did three times last year, as well as for an entire week during my freshman year of college, you are not experiencing normal PMS. Something is wrong, and it is most likely endo. Missing work or class due to cramps is not normal PMS either. Don't let any doctor tell you it is.
While infertility isn't something I dealt with while searching for a correct diagnosis, simply because I was not trying to get pregnant, it's the most common—and usually only—way doctors consider endometriosis as the culprit of a woman's medical issues. This is likely because many more OB/GYN's are trained in lasering off enough endometriosis for a woman to get pregnant than are trained to preform surgery to remove (read: cut out) endometriosis from any and every organ it is attacking. If you are struggling with getting pregnant, you could have endometriosis. However, don't just go to the first OB/GYN willing to "burn" off your endometriosis. Research your options and go to the best surgeon—with the most experience—you can afford. A good place to start is with the Endometriosis Foundation of America. Their research department, the ROSE Study, listened to my symptoms and directed me to Dr. Cook.
If you have made it through this list and find you have more of these symptoms than not, don't worry. When endometriosis was first mentioned to me, I didn't believe I could have it, nor did I want to. It's a disease without a cure, and it requires surgery. But my diagnosis and surgery have set my life back on the right path. While it's daunting, it's also good news: You're only going to get better from here.