Where do I even begin? I’ve been thinking about writing this for about a month now. I’ve been organizing thoughts in my head and notes on my phone. One minute, I’m angry at the medical profession for 20 years of ignorance, misdiagnosis, and mistreatment. I’m frustrated with the lack of federal funding that goes toward endometriosis research and studies. I’m confused by the majority of OBGYNs who accept origin theories and causes of disease that were developed a century ago and are so outdated, instead of reading the current research and proposed theories. I’m baffled that these same doctors don’t refer women to excision specialists but instead decide to “treat” the disease themselves, leaving women in pain. It all boils down to this: a lack of education, awareness, and patient advocacy. As a suffering patient who has been suffering for over 20 years, I myself am guilty of all of these things. However, I took control of my life and found the answers. So that is where my story begins.
I won’t bore you with every single detail about my pain. I most certainly am not looking for sympathy. I want to highlight the main instances that stick out in my head, as well as the treatments, both successful and failed, over the years. Most importantly, I want to educate readers on the disease itself and how I finally found the correct treatment. I want to advocate for the approximately 10% of women out there suffering from this horrible, painful disease.
Let’s start with a quick overview of endometriosis. Endometriosis is tissue that RESEMBLES the endometrium that exists in other places outside of the uterus. It does not spread from location to location but rather grows deeper with time in its original locations. Endometriosis is an inflammatory condition and also produces its own estrogen. It can be a systemic disease and can cause chronic pain, regardless of whether you’re on your period or not. While the origin of endometriosis is not truly known, current research by Dr. Redwine and his colleagues proposes a much more complex theory than Sampson’s Theory of retrograde menstruation, which suggests that during a woman’s period, the endometrial cells flow from the uterine cavity backwards through the fallopian tubes and implant in areas of the pelvis and other surrounding tissue and organs. Redwine’s theory, however, suggests that you are either born with the endometriosis implants or you were exposed to dioxins, which is known to cause endometriosis.
My story starts the same as most girls with the disease: heavy periods starting at the age of 10, cyclic pain by the time I was 16, gastrointestinal problems and back pain by age 20. I was brushed off by the first OBGYN (a woman, no less), who I saw at 16 and was told it was “normal” to have pain during your cycle and that I was simply a moody teenager. Her solution? Birth control pills and low dose antidepressants (Sarafem) to treat her misdiagnosis of “premenstrual dysphoric disorder.” I carried on this way for the next five years, and the pain and heavy bleeding affected my life in more ways than I can count. I remember not being able to go to swim practice during day one or two of my cycle, or having to get out after only 30 minutes to change my tampon because I bled through that fast. NOT NORMAL. I remember trying to skip my period for a cycle by skipping the sugar pills so that I could compete and swim as fast as I’d trained for championships to avoid the horrible cramps and abdominal pain. Not only did this not work, but I then continued to bleed for the next month straight. NOT NORMAL. Was I still a moody teenager? Yes, because of the unimaginable pain I experienced monthly and because nobody would listen to me because this was all “normal.”
By the time I was 21, I was already on my third OBGYN and still getting nowhere; I was just prescribed different types and dosages of birth control pills every couple of months, since none of them did anything to control my pain or to lessen the bleeding. After being hospitalized mid-way through my senior year of college from severe abdominal pain during my cycle, one doctor at least suspected I had something wrong, like adenomyosis or endometriosis. I had never heard of either disease before, so I raptly listened to her explanation of what the disease was and how it formed (her belief was the century-old Sampson’s Theory). As an impressionable young woman, I listened, trusted, and blindly believed. I was scheduled for a diagnostic laparoscopic surgery a few weeks later at age 22, and nothing was found. How? Why?
Now I, having educated myself on this topic, know the answer. I now know she was not an endometriosis expert, as there are only around 100 excision specialists in the United States. I know she missed implants that were likely clear or other colored implants, as she was probably only trained to look for the “accepted” textbook implants (black and brown) and chocolate cysts. However, I accepted this; we changed my birth control yet again, and I moved on with my life. I was not swimming at all anymore, as it wasn’t worth dealing with the monthly problems I’d fought through my high school and collegiate career. NOT NORMAL. I wasn’t able to go to numerous concerts I’d bought tickets for if they happened to coincide with my cycle because I couldn’t get out of bed for days at a time. NOT NORMAL. I spent several hours while on vacation in Puerto Rico one year lying on the bathroom floor in the fetal position with the steam from the hot shower water to help ease my pain, instead of relaxing outside with my family. NOT NORMAL. I was starting to believe this was all in my head or that I just “couldn’t handle” being a woman.
By the time I was 26, I could no longer wear tampons due to the pain. I returned to the OBGYN and insisted something was seriously wrong. As such, I had my second laparoscopic surgery with this same OBGYN, as I didn’t know any better, and visible disease was found all over. Whatever method she chose to remove it was amateur at best and did nothing for my symptoms or my disease. I was immediately put on Depo Provera to “stop the pain” and lessen my bleeding so the disease wouldn’t be able to “spread.” Two shots and six months later, I had bled daily, had abdominal pain regardless if it was my cycle or not, and could barely walk without being doubled over in pain. Needless to say, I was FED UP.
Age 27. On to OBGYN number 4, this one at least a fertility specialist, who also had experience treating women with pelvic disorders, including endometriosis. We schedule laparoscopic surgery #3, this time a “novel” technique called CO2 laser ablation of endometriosis. Let me stop for a second and give a quick lesson on ablation. It is a surgical procedure that is used to remove or destroy endometriosis cells, typically by superficially burning the lesions. Endometriosis (stage 3) was found and burned off of my cul-de-sac, right and left uterosacral ligaments, right and left ovaries, and the right and left ovarian fossa. It is also important to note here that there were no adhesions at that time. The next step was treatment with Lupron Depot (gonadotropin inhibitor/mimics menopause) to stop my periods so that the disease would not be able to “grow back.” Unbeknownst to me, none of this was true.
I chose to stay on Lupron Depot for nine years because I was scared to death to go back to having regular periods. Scared the disease would grow back. Scared of the debilitating pain. And in my head, the drug worked. It stopped all my symptoms, and, being uneducated about the disease and the medication, I believed it had completely stopped the spread of my disease. However, the old symptoms started to return, and numerous new ailments arose. Pelvic and hip pain, blamed on a torn labrum. Excruciating low back pain, blamed on herniated discs at L4/L5 and L5/S1. Horrible gastrointestinal pain and bloating that lead to a fear of eating too much, blamed on an eating disorder. Constipation or diarrhea, as well as not being able to evacuate my bowels without pain and excessive straining, blamed on chronic dehydration and a lack of fiber in the diet. Chronic fatigue that even 10-11 hours of regular sleep, each night and over years, couldn’t help. More misdiagnoses and mistreatments. More OBGYNs and specialists not connecting the dots nor forming a big picture of the underlying problem.
Age 35. I learned about Nancy’s Nook Endometriosis Education (an online Facebook group with self-guided learning modules, not a support group). I spent months pouring over research, doing online learning modules, reading scientific papers, reading several books, talking to other women with the disease etc. I learned about excision specialists, and I decided to make an appointment with Houston’s very own renowned excision specialist (OBGYN #7 for me in 20 years). Like I mentioned earlier, there are extremely limited doctors with this type of experience and vetting. For example, there are only four in the entire state of Texas. Now, what is excision surgery? When done correctly by an expert, this procedure physically cuts out all the disease, regardless of location in the body or how deep it is in the tissue. Lesions are removed completely from all visible locations, instead of superficially burned at the surface, like in an ablation.
During my post-op to review the surgical and pathology results, I learned that my disease was by no way gone, as it continued to grow deeper into the tissues, since it was not correctly removed in most locations during previous surgeries. Endometriosis implants and adhesions were missed in several other locations in my pelvic area, some of them golf-ball sized. Pathology confirmed that I had endometriosis, giving me a definitive diagnosis. While the disease was not on my ovaries or ovarian fossa this time, it was still on my uterosacral ligaments (hence my back pain) and in my cul-de-sac, proving that it was clearly not removed via superficial burning nine years ago. There were also endometriosis lesions on my pelvis, and a blood vessel had adhered itself to my pelvis, calling for a major vessel reconstruction in the middle of my surgery (hence my hip pain). Endometriosis lesions were also removed from my right and left pelvic sidewalls, my right and left perirectal spaces, my rectum (hence my GI problems), and my presacral space, all missed by a non-expert in the past, several times over. I am now also working with other specialists on the autoimmune disorders that seem to go hand-in-hand with endometriosis patients—namely the Hashimotos/thyroid (hence my chronic fatigue) problems and the Celiac/gluten insensitivity (hence, again, my GI problems)—since all these disorders have the same root cause: inflammation.
Here’s how I equate it now: if you had cancer, would you expect your regular general practitioner to treat it or would you go to an oncologist? It’s the same idea in the world of women’s health. The bottom line is that many doctors don’t even know what endometriosis is, and what many women have been told by their regular OBGYN is incorrect and based on an outdated theory. This is partly because of a lack of continued education and a lack of patient advocacy for this debilitating disease. Birth control (any form or hormone), Lupron Depot, natural menopause, hysterectomies, pregnancies, and ablations, are not the answer or the magic cure: they mask the symptoms temporarily. Endometriosis has its own estrogen source and will never “go away” unless properly excised, meaning physically cut out and removed from the body in all locations. After that, you need to keep advocating for your health and get to the root cause of your pain. It’s not easy. My journey is by no means complete. But I’m making progress. I’ve found my voice, which is the greatest weapon of all. Don’t sit back and accept what you’re told: challenge it until you’re satisfied with the outcome!
Lauren studied Chemical and Biological Engineering in college and received her Ph.D. from Drexel University. In addition to her passion for studying and researching medical conditions, Lauren is an avid open water marathon swimmer. She has completed several endurance events, including winning two National Titles, but her favorite swim to date is Swim Around Key West (12.5 miles). Lauren is also passionate about rescue dogs, as she is the mom to two senior rescue shih tzus, Alfie and Sperry. Lauren was originally diagnosed with endometriosis in 2006 but continues to fight even today. She is committed to raising awareness about the disease to the general public through her social media platforms.
Editor's note: Would you like to contribute to EndoStories? Click here to learn how to submit your work.
*Patient stories submitted to EndoFound.org are the views of the patient and not necessarily those of the foundation. All testimonials are from real patients, and may not reflect the typical patient’s experience, and are not intended to represent or guarantee that anyone will achieve the same or similar results.