Let me tell you about my friend, Nya. She lives in Nairobi, Kenya. I live in Massachusetts, so we haven’t actually seen each other, but she is my friend. We met in an endometriosis support group on Facebook called Nancy’s Nook. Facebook can drive you crazy sometimes, particularly around election season, but it can also provide you with some amazing connections. And sometimes, those connections can save your life.
Nya has spent the last few decades living in pain. From puberty onward, she’s had a multitude of gynecological, gastrointestinal, urological and pain issues. Years of visiting doctors to find answers left her with no answers at all. She was told that it wasn’t possible to be in that much pain, and wasn’t believed. Can you imagine how damaging it is to your soul to be told you are crazy for feeling the way you do? As her quality of life decreased, she began researching on her own. And this is what led her to Nancy’s Nook, a Facebook group run by a nurse (and a passionate endometriosis advocate) filled with files and research…basically an online encyclopedia for up to date endometriosis information. It was here that she spent two years learning that the standard treatment for endometriosis (hormone therapy, ablation, hysterectomy) doesn’t work. Just ask the generations of women who have been treated that way…most of whom have had over a dozen surgeries, after the endometriosis repeatedly “grows back.” She learned about the more recent data which proves that correct treatment consists of wide excision surgery…basically, removing every last speck of endometriosis. Finally, after 25 years, she had her answer.
Unfortunately, there were no doctors in Kenya who knew about this. Turns out, there were no doctors in her entire continent who knew about this. She had to advocate for herself, and travel to Romania in order to find an excision specialist. This past September, she finally had proper excision surgery for deep infiltrating endometriosis. It was removed from her pelvis, ureters, uterosacral ligaments, pelvic cul-de-sac and bowels. They removed bilateral endometriomas, which are large ovarian cysts filled with endometriosis tissue. She had a “frozen” pelvis, along with “kissing” ovaries from all the adhesions in her body, which were surgically corrected.
After surgery, she felt validated. The pain was not “in her head” as she had been told for over two decades. Can you imagine how difficult her life must have been, both physically and emotionally? Imagine no one believing you, or being told there’s nothing wrong with you, as you have days where you physically can not get out of bed? It’s so easy to think of her as one of many who live in areas where they don’t have the most up to date health care systems and medical advancements like we do in the United States. We Americans get to read this essay from a point of privilege, as we are lucky enough to live in a country that has the best medical care in the world. Or do we?
Remember, I met Nya in that support group. Why would I need to be in that type of group? I mean, I live in Massachusetts, and we are famous for having the top doctors and hospitals in the entire world, right? Yet, I was in that group. And even though I live here, surrounded by undoubtedly the best medical care, I have lived the same life as Nya. I too have suffered decades with pain and ailments no one believed. I started out with horrifically heavy and painful periods and incredible low back pain which kept me home from school at least one day each month. I had a host of gastrointestinal symptoms, fatigue and shortness of breath. As the years passed, my symptoms worsened, and I sought out specialist after specialist. Starting in my early twenties, I saw three GI doctors to seek relief from the chronic constipation, bloating, nausea and cramping, who performed colonoscopies and endoscopies with no findings. They diagnosed me with IBS and sent me on my way. I saw two pulmonologists for my persistent shortness of breath and had pulmonary function tests, which revealed nothing, and I was sent on my way. I saw a neurologist who performed muscle testing to determine why I was having searing pain with tingling down my legs. He found nothing and sent me on my way. I saw an electrophysiologist for my heart arrhythmia who performed a double ablation, which didn’t work, and he sent me on my way. I saw a physiatrist for my chronic back pain, who did trigger point injections, which didn’t work, and he sent me on my way. I became my chiropractors best patient, money-wise. I saw two rheumatologists who told me there was nothing wrong with me, and one of them suggested an anti-depressant, asking if maybe childhood trauma was causing me to think I had all these ailments. I had a great nurse practitioner, who sent me to most of these specialists, but once all the testing came back negative, she too suggested an antidepressant. That’s when I stopped complaining.
Like Nya, I began researching on my own, as my symptoms were getting worse. Thank God someone invented the internet during all of this! One day, around ten years ago, I plugged in “painful bowel movements during menstruation” and bingo- “endometriosis” popped up everywhere! I was ecstatic to finally have an answer. I went straight to my gynecologist, the same one I reported painful sex to, years earlier, who told me there was nothing abnormal and sent me on my way. I showed him my search results and he casually said, “yes, you may very well have endo, but it can only be diagnosed by surgery, and then the treatment is just birth control pills. So, let’s just put you on them.” I was grateful the answer was so easy! And yes, the pills made the pain so much better…for a few years. All my symptoms then worsened, and I returned to him. He said it was time for a hysterectomy. I trusted him that this was the answer. Prior to the surgery, I asked him to please look at my bowels, particularly on the left side, and see if there was endometriosis on them. I knew something was wrong, and I knew exactly where it was. I could feel it. A month later, at my post op visit, I eagerly asked what he saw. He just stared at me blankly. He forgot to look. He checked the operative record and said, “You have mild endometriosis on the pelvic cul-de-sac,” and sent me on my way. That was five years ago.
Fast forward to this year, when my symptoms became debilitating. I began cyclically bleeding rectally and knew it had become serious. My bloating and abdominal pain was worse than ever. I legitimately looked six months pregnant two weeks each month. I referred myself to an endometriosis “specialist” at the Brigham and Women’s Hospital in Boston…one of the best hospitals in the country. He ordered a colonoscopy and it revealed a partially obstructing endometriosis mass in my colon. I learned it’s rare for the disease to progress this far into the colon, so I became scared. Terrified, actually. It’s at this point that I stumbled across Nancy’s Nook on Facebook, along with a few other groups. I learned about the current treatments and read the horror stories of countless numbers of women who have had dozens of failed surgeries and decreased quality of life on hormone therapy. And when I returned to this “specialist” in Boston, he told me he’s putting me on hormone therapy, having a colo-rectal surgeon remove the tumor and that he would then remove the endo from wherever else he saw it, yet would leave it on the outside of my bowel, because it’s too dangerous to remove it from there and “it’s just going to grow back, anyway.” He explained that endometriosis is caused by retrograde menstrual flow, which is an antique theory. I left there crying…hopeless.
I returned to Nancy’s Nook and found out there are three, maybe four excision specialists in Massachusetts. Only four? Are you kidding me? With the medical reputation this state has? That’s not right. Anyway, to make a long story, well…long, I found Dr. Malcolm Mackenzie, who performed excision surgery on me this past September, a day after Nya had hers in Romania. He removed endometriosis from my bilateral pelvic brims, bilateral pelvic sidewalls, bilateral abdominal sidewalls, anterior abdominal wall, bladder, ureters, diaphragm, liver, the scar from my previous hysterectomy, pelvic cul-de-sac and Fallopian tubes. In addition to removing the endometriosis tumor found on my colonoscopy, he removed a second one which wasn’t noted prior. He also noted thousands of black “tar-like” areas in my fat tissue, which represented a previously ruptured endometrioma. Surgery took six hours and six weeks later, I am still recovering…yet grateful. My leg pain is gone, and I haven’t felt the arrhythmia since. I do believe this man not only saved my life, but saved my sanity. He believed me.
Tell me, how is it possible that a woman in Kenya and a woman in Massachusetts share the same story of a lifetime of misdiagnosis and medical mistreatment? How is it that we both suffered almost a lifetime of debilitating physical symptoms and were repeatedly not believed and sent on our way? How is it that only a handful of doctors across the world care enough to try and figure out why the traditional endometriosis treatments don’t work? Why are gynecologists not required to have specialized credentials for performing advanced endometriosis surgery…or even stage one surgery? That’s not right. Why aren’t there different medical codes for advanced endometriosis? As it is now, a surgeon gets reimbursed the same for an outpatient surgery as he or she would for an eight hour surgery. Of course so few of them want to spend their time learning to perform this surgery correctly! That’s not right. And how is it that no one talks about this? Every single person I tell this story to has the same response, “I had no idea this is what endometriosis is.” Even I didn’t know that this is what endometriosis is, and I’m a nurse. That’s not right. This affects millions of women, and no one is talking about it. That’s not right. My gynecologist, who let this grow through my colon for ten years, had no idea that this is what endometriosis is. That’s not right. As Dr. Mackenzie says, it’s a social injustice. He’s spot on. If this disease was affecting men this way, if it caused debilitating pain, affected their sex life and had anything to do with their reproductive system, you can be damn well sure there would be a cure by now. But, it doesn’t affect men. And no one is talking about it. I did not learn any of this while I was in nursing school. And Dr. Mackenzie and my original gynecologist and the “specialist” at Brigham and Women’s did not learn any of this while in medical school. It’s a silent epidemic that no one is talking about, and that’s not right. If left untreated, the endometriosis on my ureter could have cut off my kidney. I wonder how many women have died from kidney disease when it was really just untreated endometriosis? If left untreated, it would have obliterated my bowels. Endometriosis is one of the leading causes of infertility. Why is no one talking about this???
Well, I’m talking about this. And Nya’s talking about this. And so are my other endo warriors. We’re going to make it right. And we’re just getting started…
This post was written in response to Linda G. Hill’s Stream of Consciousness Saturday
