I often lie in bed, searing pain shooting through my body--akin to what I imagine having red-hot barbed wire wrapped around your internal organs feels like– I try to think of a time when this wasn’t my life. This all-too-familiar pain visits regularly these days, tormenting me almost every moment, to varying degrees. The days before this pain are long past, in a childhood decades ago, one that I can now only vaguely recall. I have lived with this for 20 years now--maybe more. It is difficult to recall exactly when it all started. I know for sure that it got so severe by the age of fourteen that I was a frequent visitor to my doctor’s office. For nine long years I was told I was “fine.” I was “attention seeking”, “pill seeking”, and a “hypochondriac.” It was “all in my head,” and I needed therapy, not a doctor. I saw over a dozen different doctors during this time, each with their own similar barrage of insults, offering little help. I started getting constant vaginal and urinary tract infections. As soon as I stopped antibiotics, they would come back. I threw up constantly. I had fevers that would not subside, even with the use of traditional fever reducers. They learned who I was on sight at the emergency room, where I cried and begged for someone--ANYONE--to help me. A young doctor with a tongue ring who was barely out of med school was the first one to actually listen as I cried and told my story. I cannot remember his name, as much as that pains me. He wasn’t just another doctor in a white lab coat-- blurred faces now, each dismissive or too busy with other patients to listen; he listened, and referred me to Dr. Kevin Windom of OBGYN associates in Marietta. Dr. Windom would change my life. He listened to my story, wrote down my symptoms, and airing his suspicions on that very first appointment, stated directly, “It sounds to me that you very likely have Endometriosis.”
Endometriosis? I had my own suspicions that this was the case, my aunt having mentioned it and having done my own research on possible causes for my symptoms just weeks prior to the visit when I finally was given help. In sterile medical terms, it is an endometrium-like growth similar to the lining in the uterus that sheds during menstruation every month which causes lesions and inflammation/bleeding outside of the uterus. It causes severe abdominal pain, back pain, break through bleeding, menorrhagia, chronic fatigue, nausea, vomiting, issues with bowel movements/urination/sex, severe bloating, headaches, and a ton of other symptoms that are dependent on the location of the disease--the pelvic cavity is the most common, but it can grow literally anywhere in the body. They don’t know what causes it; there is no cure).
Within four months of our initial meeting, after a barrage of tests and hormone treatments, I had an exploratory laparoscopic surgery. The endometriosis was everywhere, and it was so severe that adhesions were fusing my organs together; rectum, vagina, ovaries, fallopian tubes, and recto uterine pouch were all affected, with the vaginal wall perforated and bacteria crossing across to the urinary tract (and vise versa.) He cauterized the growths that he could find, separated my fused organs, and stitched me back up.
When I awoke in post-op recovery, boyfriend by my side, Dr. Windom entered and smiled, “We got it! We’ll talk about everything I found at your follow up appointment. Just focus on healing right now.” I thanked him, but I didn’t smile. I knew what this meant. I knew that I would never be free of it, and that this would not be the last surgery. I knew that it would mean medications, hormones, possibly a loss of fertility, possibly a hysterectomy, and so many other things. I cried and went back to sleep. I cannot say that “ignorance is bliss.” I could have died from the constant infection it recurrently caused, had we not discovered what was going on. Knowing is not always easy, though, either.
For a time, I grappled with my new reality— how life altering an incurable illness can be--which is to say, I completely lost my shit for a while. I joined support communities online, lamented my new life, cried into the late hours of the night. The pain continued after the surgery. Though not nearly as severe as before, it never has gone away--not completely. (I also found out that I have a slew of other medical issues that cause overlapping symptoms-- a series of other stories, entirely.)
Two years later, after trying almost every treatment in the book, I had another surgery where the insides of my bladder and fallopian tubes were checked, in addition to the superficial surfaces on which the endometriosis had regrown. This was after years of pain management which only resulted in heavy medical bills and a medical dependence on opioids in an attempt to treat the pain caused by my endo and other chronic pain issues. By the time of this surgery, I was on over a dozen prescriptions a day. I still had not found relief, and the side effects from the medications were brutal. I honestly cannot remember most of them. I know what they were for (antidepressants, muscle relaxers, anxiety meds, hormones, nerve meds, etc) but brand names are a blank because I switched meds so often. I also don’t know what side effects to attribute to what medications because when you’re on that many it’s difficult to say which one is responsible for which side effect. I tried the “endo diet,” a joyless restriction to my already increasingly joyless life in which I couldn’t eat dairy, wheat, refined sugars, nightshade veggies, meats (particularly red meat), eggs, soy products, and others. I slowly eliminated each thing from my diet, keeping a journal of symptoms as I did so. I had been doing acupuncture and traditional Chinese medicine mixed with the “best” Western medicine—the best that I could afford, anyhow. I navigated all of this without insurance, my medical bills steadily growing, along with the feeling that it was all pointless. Despite a slew of different hormones, muscle relaxers, pain medications, nerve medications, anti-depressant and anti-anxiety medications, surgery, exercise, and diet change, nothing helped.
Due to fears of side effects, I refused the Lupron shot on more than one occasion. Lupron is, for those that do not know, a chemotherapy drug that is traditionally used to treat the symptoms of prostate cancer. It just also happens to be one of a few gonadotrophin-releasing hormone (GnRH) agonists that cause an overstimulation of hormone production, in turn resulting in ceasing that hormone’s production--AKA, ‘temporary’ chemical castration. ‘Temporary’ is in quotes due to the fact that my doctor told me that even if the drug is stopped, some people never regain their fertility afterward. The horror stories that I have read in forums and in my support groups about this drug are not uncommon, and range from short term to life long side effects (such as a loss of bone density, nausea, vomiting, night sweats, hot flashes, headaches, weight gain/loss, dizziness, joint pain, memory loss, and fibromyalgia).
Eventually, I stopped all of the medications and treatments because I was wasting my life, money, and sanity on treatments that were not doing anything to improve my quality of life. I was sinking into a deep depression, feeling like shit, and trying my best to get better – and nothing was working. It has been five years since my last surgery. I’m in need of yet another one, but can no longer afford the doctors or medical bills that my old job gave me the luxury of affording.
Even so, I’d rather feel the pain that I feel than to be on all of those medications again, and to constantly subject my body to the side effects, procedures, and loss of income caused by the ‘management’ of my disease. Treatment actually has to work for the disease to be considered managed, and the treatments for endometriosis are abysmally ineffective. In my experience, they have been only a band aid. It somewhat slows the disease progress, in some cases--and not at all in others.
I wish that I could say that my experience is unique. While everyone’s experience is unique in a way, since the growth rate and the location of the endo growth can differ greatly from person to person, my experience with seeking medical treatment, however, is far too common. It can frequently take three to eleven years to get a diagnosis. It is also not as uncommon a disease as one would assume, with almost 200 million women estimated to suffer from endo world-wide (approximately one in every ten women). Hurdles to treatment are also common, with economic disparity and the lack of affordable health insurance in places like the United States – but, also, with stories all over about insurance companies increasingly denying claims related to surgery for endometriosis, citing that the surgeries are “medically unnecessary” procedures. This is laughable, of course, as the disease greatly decreases a woman’s quality of life! For some women, the disease is so severe that they can’t even work due to the pain they experience from day to day.
On top of that, endometriosis is not a condition currently recognized as a disability. Women who seek out help are frequently labeled as "drug seekers", despite having a surgically documented, very real disease. This can be particularly dangerous if someone has, say, endometriosis of the diaphragm, which can cause pneumothorax, aka collapsed lung, or endometriosis of the brain, which can cause seizures and encephalitis, among other things. Though endometriosis awareness is gaining more traction these days, due mostly to the women who suffer from it and the family and spouses supporting their loved ones who live with the disease, we still have a very long way to go.
Though there are many theories about what may cause endometriosis, there has been no definitive discovery that uncovers a true cause for the disease. Until we know the cause, it is extremely difficult to find effective treatment. It’s notable that some women have found relief with the treatments that I, myself, have not found relief with. We need a cure—or, if not a cure yet, tailored treatments that work for groups with different manifestations of the disease. As of now, if the lesions are in the brain, all they can do is remove the lesions. Behind the eye? Remove the lesions. In/on the reproductive organs? Remove the lesions.
Unfortunately, even with surgical intervention, the lesions can grow back, even with the “gold standard” treatment of excision surgery by highly trained, endometriosis specialists. Even if you can, by chance, find one of these specialists, it’s an uphill battle. In my experience, they have been few and far in between, with general OBGYNs having little actual knowledge or experience with the disease. Even the acclaimed Center for Endometriosis Care in Atlanta, states that they are an out of network provider for all insurance companies. I don’t have insurance, and haven’t for any of my surgeries. The CEC says on their website that they are considered out of network by everyone—they’ll take insurance, but there’s no chance at getting a more affordable in network cost. I live only an hour and a half away from them, and have never been able to afford their services, nor had insurance that would adequately cover it; most people don’t have $5k to $30k to drop on a surgery at any given time. I have personally sent in a packet for consultation, and never heard back (perhaps my packet was incomplete? This was almost 10 years ago. It says on the website if it’s incomplete they won’t contact – It’s unlikely, even with the high volume of patients, that it would take this long to hear back). One thing is for sure. Until there is more research about endo, better access to care, and treatments that actually work, millions of women will continue to suffer needlessly. I can only give the number of women with endo (200 million+) as an estimated figure, here, because not everyone that has it will have pain/symptoms. At least not as long term; I don’t know what percentage of that 200 million women have long term, lasting issues and pain.
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