This blog has been years in the making. The concept first resonated with me in 2001 on a Yahoo Group I created dealing specifically with Stage IV Endometriosis. Back in 1999, I relied solely upon the Endometriosis Research Center’s Yahoo Group, which included very young women dealing with Stage I & II Endometriosis, as well as Teen Endo. While just as debilitating as the more aggressive stages of Endo, these young Stage I & II women had a better chance of reversing their infertility and pushing Endometriosis into full remission before the treatments & disease
destroyed their lives. My experience, as well as several other women of the list, needed an outlet and social connection where our posts would not cause unnecessary fear amongst the list. By 2001, when the topic first appeared on the Group, I had been battling Endometriosis for 13 years which included 4 surgeries, 1 round of Danocrine, 1 round of Lupron, and 2 rounds of Depot Provera. While Money was an ever present issue in my life, it had not become the dominant force in my decision making.
At the time, I was Well, as in not sick, not unstable, not unemployed. I had just celebrated my first full year of recovery, and was counting with temerity the next 2 which would officially put my Endometriosis into remission. I had just begun to re-build the Life that Endo destroyed, which included tending to my career and my ability to generate income. The Endometriosis Research Center had received generous donations which allowed them the political lobbying necessary to finally launch the much needed National Endometriosis Awareness Campaign. They had already proven themselves as a Political force to be reckoned with for the 106th US Congress in their partnership with Planned Parenthood of America in the passing of AB2820 by the Senate Committee for Health & Human Services (2000), and the campaign for National Endometriosis Awareness was well underway amongst the tight knit Endometriosis networks on the internet. By 2001, The ERC was in full Political battle with the 107th US Congress, and it would be another year before the ERC had success with House Congressional Resolution 291 recognizing Endometriosis as a debilitating gynecological disease and officially removing the disease from the realms of Infertility, firmly planting Endometriosis in the Gynecological realm. Previously, Women diagnosed with sever Endometriosis had no means of circumventing both the Income barriers and the treatment barriers Society at large placed on them. They lost financial support if they lost their husbands and/or their careers in their struggle against the disease, because they were not recognized as having a disability. For those who were in treatment, they often found themselves fighting their Insurance carriers. Endometriosis was and remains classified as an Infertility related disease and unless they had specific Fertility coverage, they could not continue their treatment. At the time, 2001, many women were being kicked off their treatment protocols by Health Insurance carriers changing the classification on Endometriosis patients mid-treatment.
Within three years I had another relapse and was hospitalized again for surgery related to Endometriosis and the recovery clock reset to zero. Any gains I had made in the re-building process were crushed once again. By then, 2004, Endometriosis was recognized as a Disability, but the process for applying was nearly impossible, thanks to Health Insurance carriers continuing their fight to keep Endometriosis classified as a Fertility related disease. This quiet rebellion continues today despite H.Con.Res291 National Endometriosis Awareness. I remained on extended unemployment and State Disability until 2005, when I picked myself up again and went back to work. It wasn’t until 2007 that I celebrated the three year remission anniversary in Las Vegas – new life, but with a twist: no more Endometriosis Treatments. In my delirium, I thought if I simply denied the illness, it would go away, it would have no bearing on the definition of Me. After all, the Medical Community still had not embraced the concept of Systemic Endometriosis, and they are still unwilling to recognize the health issues created by the very treatments themselves.
What began as an email response on the Yahoo Group Chronic Severe Endometriosis in 2001, as a topic regarding “Money and Endometriosis”, became a core issue central to my own basic Quality of Life. While the original post dealt strictly with Endometriosis and Endo Patients, I realized in looking back that it is about far more. It is about the need of money for the sole purpose of managing Endometriosis and the cost of Endometriosis. It is about protecting my ability to generate my own income. It is about the lengths I take in hiding my illness and shielding my professional life from my personal life.
Recently, my personal life and my professional life came crashing together in one of the most humiliating incidents I have ever encountered. The implications are enormous and have probably ruined any chance I have of ever continuing my career. The fortified wall of denial I had built to contain my Disease turned out to be a flimsy sheer curtain. My false belief that I had managed to beat not only the Disease, but also the social stigma of chronic illness, dissolved like sugar in hot coffee. The only funny thing about the incident was the reaction of the other party. I was hysterical over the fact that “people would find out I was sick”, that my professional life would now carry the stigma of expensive chronic illness. Nothing else mattered to me – the bottom line was that my disease was outed against my will, by individuals who haven’t a clue how to spell Endometriosis let alone understand it’s long term affects.
Some context is needed here so I will dial back to my last relapse which began in October 2003. From the time of diagnosis to the actual surgery date in February 2004 (yes 4 months of agony, antibiotics, pain pills and bed rest) I began to re-evaluate my quality of life. November 2003 would have been the magical three year recovery point and the attainment of the ever elusive Remission. Instead, the Endometriosis did exactly what my oncologist warned me might happen way back in 1999 – it went microscopic, or Systemic – previously referred to as Ovarian Remnant Disease. The microscopic Endometriosis implants began to travel around my body the way the Jet Set cruise around the Mediterranean. By Fall 2003, the microscopic implants travelled to my respiratory system and eventually took up residence in my sinus cavity – the entire left side of my sinus disappeared by a huge endometrial mass. To make matters worse, of the 6 prescriptions I was given to shrink and control the tumor, three also caused increased hormone production, triggering episode after episode of Endometriosis pain and emotional insanity.
By the time the surgery date came around in February 2004, I had given up all hope and was preparing to simply die. I executed a Health Care Directive (Living Will) which included a Do Not Resuscitate Order (DNR) with explicit instructions that under no circumstances were life saving efforts to be made in attempting to wake me from anesthesia. Absolutely no defibrillation was to be used. For those of you who have had this procedure done to you, I don’t need to explain or go into detail how much it hurts and how long it continues to hurt weeks after the procedure. The day before my surgery, literally 24 hours prior, I received a letter from my Insurance provider informing me that as of February 28, my coverage would terminate. That was the last time I had Insurance coverage which I paid for out of my own pocket. Any Insurance coverage I have had in the following years has been free to me, as part of an Employment Compensation Package.
Ten days into my recovery, when the post-surgical antibiotics were complete and the only remaining prescriptions I had were for pain relief, I made the decision to stop all synthetic drugs, cease all treatments related to Endometriosis, abandon the ineffectual and hostile Medical Community, and even drop the Endometriosis Support Groups I had relied on. I set out on my own. Since I woke up from the surgery – not part of the master plan at all – I decided that if I was sentenced to a life of hell within an Endometriosis riddled body, then I would remain in this life on my terms, and only my terms. My 16 years of battling the disease had earned me the right to make my own decisions in regards to my body.
I tried everything imaginable to manage the surgically induced menopause, the mood swings, the night sweats, the bleeding bowels, the bloody noses. Hormone Replacement Therapy after my hysterectomy only resulted in further Endometriosis relapses because not a single Medical Professional could accurately prescribe the correct dosage to prevent the build up of Estrogen – the very hormone which caused my Endometriosis. I had to rely on alternative medicine – vitamins, tonics, essential oils, herbal supplements, creams, lotions, dietary changes, you name it. Nothing worked. From February 2004 to October 2004 I found no relief.
In a chance encounter at an alternative medicine store, I ran into a woman my age who also had Stage IV Endometriosis which also went microscopic. She too declined a second round of Chemotherapy (Lupron Depot) and Radiation. She too had abandoned Hormone Replacement Therapy. It was like talking to myself about myself. After a few minutes of chat, the woman leaned in close to me and made a confession. She told me in hushed tones that one thing, and only one thing, had managed to send her Stage IV Endometriosis into complete remission. She gave me the name and number of a local clinic who had a resident physician that was doing extensive research on alternative medicines which worked best at managing the intense pain related to dysmenorrhea and Endometriosis.
The next day I had an appointment with one of the kindest, gentlest, well educated doctor’s I have encountered since Dr. Ronald Leuchter saved me in 1999. It was an amazing encounter. The man spent nearly 30 minutes educating me on my options, and what specifically I needed to control my disease along with techniques for monitoring symptoms. He steered me to a pharmacy nestled amongst the multi-million dollar homes in Naples, where the clientele were predominantly women suffering from Cancer. This pharmacy, unlike others I tried, treated me like a patient. They had a lovely waiting area which had a distinctly feminine touch, and the male employees spoke in hushed tones with kind, respectful words. Never had I experienced this level of respect from anyone in the mainstream Medical Community.
After 30 days I could not believe how well I truly felt. I continued my vitamins specifically the C and the Calcium, and I monitored my diet, eliminating dairy all together and only consuming red meat once or twice a month. By January 2005, I officially began to hide my disease. Every 6 months I would take a 6-week drug vacation in order to prevent my body from building up a resistance. My medical expenses went from over $1000/month to less than $400/month, and that included my cost for the vitamins.
For 6 years I continued my routine and for 6 years I have not had a single Endometriosis episode. In 2007, I moved to Las Vegas, knowing full well that the state of Nevada did not have the same level of physicians practicing Alternative Medicine as in California, however they had better mainstream Medical care and coverage. I foolishly tried to live a normal life – a life without the stigma of Endometriosis or chronic illness. It was my life, on my terms, and my career was beginning to once again thrive. One of the last things I did before leaving California was a type of cleansing, a purging of sorts: I shredded all of my medical records which pertain to Endometriosis. (Relax, they are easily reproduced) My ability to generate income was intact, Endometriosis had no bearing on the definition of Me.
Within nine months the nose bleeds returned. I lied and claimed allergies. Within 12 months the migraines returned, again I claimed allergies. I had Insurance coverage to help defray the cost of the drugs required to keep the migraines in check, however, every prescription renewal resulted in veiled threats from the physician that the medication would be withheld unless I agreed to a mammogram, a CA-125 and blood tests to gage my hormone levels. When the physician finally made good on her threats, declaring that I was committing Medical Suicide, I stopped attending the appointments.
When the nose bleeds flared up yet again, I made arrangements to restart the Alternative treatments. My Insurance coverage had been canceled, again, so I had no choice but to turn back to alternative medicine. Needless to say, after 30 days of treatment, all of my symptoms disappeared, and I went back to hiding my disease. I spent six months looking over my shoulder while I tried to restabilize Endometriosis symptoms. Again, within nine months the bleeding began again, and by then, 2010, I had relocated back to California, back to Long Beach. The rectal bleeding began almost immediately, the mood swings were insane and the hot flashes were unbearable. I literally ran back to my clinic, only to discover the physician I loved had retired. No one at the clinic had any experience with Endometriosis. The clinic referred me to a physician who specialized in the treatment of HIV/AIDS in women, and began researching the Immune System in a bid to find the right Alternative Medicine to treat my Systemic Endometriosis.
In April of this year, I was in the middle of my 6-week downtime between treatments when a Recruiting company contacted me for a short term 90-day contract in the Los Angeles area. I accepted the position.
After spending 20+ years in Corporate life, I have learned one universal truth: HR Generalists and Recruiters are the worst gossips imaginable. If they have just the teensiest bit of dirt on an Employee or a Candidate, they will broadcast that information far and wide. Nothing is sacred to the Human Resources Specialist, everything is fair play.
I received a phone call from the Recruiting Firm’s Chief Financial Officer and the firm’s Chief Executive Officer. My required drug test came back with some anomalies and she wanted to speak with me. The CEO didn’t say much, it was the CFO who stammered and stuttered through the initiation of the call. After she literally blurted out her message, I only managed to say one word – “really”. It wasn’t a question, nor did my tone contain surprise. The only thing running through my brain in those few seconds was that these women were going to find out my secret: I had a disease; I was sick.
I think my calm nonplussed reaction to the news threw the CFO off her game. She stammered out a few more words, then the composure returned to her voice and she very officially asked me:
Do you have a medical condition?
Oh. Well what condition do you have?
(side note: this question was 100% illegal for her to ask. As a CFO she knows full well she crossed the line of legality when she asked the question)
I have Stage IV Endometriosis which metastasized to Ovarian Cancer
Do you have a medical doctor’s prescription?
The line went silent, and I knew the two women had put me on mute. When they came back on the line, the CFO asked me if I could fax her my prescription and my medical records. Shocking right? Completely illegal request. The only person I have to provide medical records to is the Physician evaluating the drug test results, not the CFO. But then, maybe I am jumping to conclusions, maybe she is a Dr. CFO and I just didn’t get a chance to see her Medical License. *shrug*
In the few minutes the phone call lasted, I experienced fear, panic, dread, embarrassment and humiliation. I quickly inventoried the situation and weighed the implications of what was happening.
The CFO began talking again as I was calculating the options. I began to stammer myself as I tried to finish a thought and provide a response to her at the same time.
“Look, I said, I will provide my Physician’s name.. but under no circumstances do I grant you permission to reveal my illness.”
I knew that informing a Recruiter they did not have my permission to reveal my illness meant nothing – gossip is their way of life. I figured I was providing personal information about myself for no reason at all. I sat around waiting for the inevitable, We’re Sorry phone call.
I did get the job, but my secret was out. It would only be a matter of time before the illness would come up, that everyone I would be working with would know my personal business. I was going to have to address the issue, it was inevitable. I was, literally, Outed.
The point of this missive is the relationship between Money, that core necessity to maintain a life in the United States, and Endometriosis, the single most devastating disease affecting women and their quality of life. Without Money, we can not buy the medicine we need to feel better. We always feel bad, every day is a struggle, and our demeanor is angry because we are stuck in a vicious cycle that is one misstep away from total destruction.
Over the next 30 days, my pre-judgments regarding the gossiping recruiters held true. I was met with hostility, anger and condescension by everyone I encountered. I could not get a sense if anyone knew about the illness, but it didn’t matter. The longer I remained in the environment, the more imminent the discovery of my disease became. It was only a matter of time. Finally, when the hypocrisy got too much, the prejudgment and hostility paired with poor or nonexistent work ethic, I left. The decision was driven home hard when the person I officially reported to came to work with a black eye. So, physical violence is ok but disease is simply not acceptable.
I watched in horror as Endometriosis rose up from the fake funeral pyre and once again took control of my life.
As I write this post, 12 years after the surgery that nearly stole my life, I find women on Facebook and Twitter enduring the same agony I did. Nothing has changed, and from what I can
see, the treatment of Endometriosis (medically & socially) has only gotten worse. There is absolutely no awareness of the disease, no advertisements, no campaigns sending a barrage of information on the dangers of Endometriosis. Only the Endometriosis Research Center has an organized campaign every year during the month of March, and this is only due to the 107th Congress H.Con.Res.291 identifying Endometriosis as a debilitating disease and recognizing March as Endometriosis Awareness Month.
It seems the general populace, including Endometriosis Patients, is in agreement with the sentiment:
I don’t want to read about a woman’s gynecological condition while I eat my morning cereal.
Boobies? Absolutely, serve them up with my OJ! But nothing concerning the hoochie, we just can’t have that.
The vast majority of the US population is intimately familiar with Aids. The NIH and the CDC have shoved AIDS awareness down our throats. Doesn’t matter if we are gay or straight, black or white, rich or poor, through out the course of your normal day you are guaranteed to see an advertisement featuring a 20-something Man focused on AIDS awareness because the disease affects 1 in 10 men (Aids.gov). This is despite the despicable statistics that the HIV/AIDS epidemic is a predominantly Women’s disease at a staggering 1 in 3, or nearly 27%. And why is this information not broadcast far and wide? Because the repercussions of HIV/AIDS in Women are difficult-to-treat vaginal yeast infections, pelvic inflammatory disease, cervical dysplasia (abnormal cell changes in the cervix), and an increased likelihood of developing cervical cancer. (Aids.gov) Sexually transmitted diseases are welcomed with the morning toast & coffee, but no gynecology. We can’t even spell that word so early in the morning.
The vast majority of the US population is equally familiar with Breast Cancer, again, we’ve had it shoved down our throats. Pink this and Pink that, everywhere Pink. We love us some tatas all day long, breakfast lunch and dinner – but no gynecology, we think that’s yucky.
How many of you reading this right now can honestly say that you have heard of Endometriosis? My educated guess is that unless you have had a female family member afflicted with the nefarious disease, you can barely pronounce it, let alone provide a definition. When women with the disease tell people they have Endometriosis, not very many get an understanding nod and a gentle pat on the back. In some cases, their pain and agony is reduced to the lowest common denominator and the ultimate invalidation: Oh so you have bad cramps during your period, right?
As a result of this permissive discrimination, many women hide their illness. They have the flu. They have food poisoning. They down play the seriousness of their disease for the sole purpose of fitting into society at large. They lie about their health in a desperate attempt to gain employment or remain employed. Many women with Endometriosis, without their job, would be in dire straights. There is no government program for the treatment of Endometriosis. Most of the women with Endometriosis can not qualify as low income, and as a result struggle to find alternative means to get themselves out of pain, usually in the form of drugs and alcohol. This is where the stereotype of the junkie comes into play. The Endometriosis groups, forums and bulletin boards are filled with women falling victim to the insensitive Medical Community who labels them as drug addicts looking for a fix.
Even Planned Parenthood, once an ally of Endometriosis, has jumped on the band wagon, forcing otherwise moral women to lie about their sexual activity, falsely admitting to the need for Birth Control pills to avoid pregnancy in a desperate attempt to gain the Medicine necessary to control the disease at low cost. In the 12 years since standing in support of Endometriosis, Planned Parenthood Clinics across the nation have failed women with Endometriosis. Insensitive Staff, uneducated Physicians, and multiple misdiagnosis has done more to harm Endometriosis than any other organization in the US. The lack of education amongst Planned Parenthood staff has been the cause of more women progressing from Stage I Endometriosis to Stage III due to inconsistent treatment. Planned Parenthood is simply not equipped to handle Endometriosis in the long term. Any Endometriosis Patient who dares to speak out regarding their pitiful treatment at Planned Parenthood clinics across the country are labeled as Right Wing Conservatives bashing the Pro-Choice movement. Which is ironic, considering Endometriosis is the corner stone of Reproductive Rights – the very ability to become pregnant – and we as patients rely heavily on the Pro-Choice movement to spur advances in medicine for us to choose from.
Those of us who have Stage IV have a much more difficult time hiding our illness. Our sick days are not 5-7 days out of 30. Post-
hysterectomy, our relapses are erratic and the attacks without warning. On average, the only effective treatment in forcing Stage IV into Remission is Hysterectomy with Bi-lateral oopherectomy – excise all tissue which produces Estrogen. The loss of Estrogen wreaks havoc on our already compromised immune systems, because by the time Hysterectomy is recommended, we have under gone multiple rounds of Chemotherapy and endless combinations of Hormone Replacement Therapy. Symptoms we experienced during the Chemotherapy (Lupron Depot) treatments come back to haunt us: Migraines, Kidney Infections, Hair Loss, Mood Swings, Night Sweats, Disorientation, and for the lucky few bone density loss and osteoporosis. Twenty-three years after my first round of Danocrine (Danazal) I am finally beginning to lose the bloated weight the drug left me with. These symptoms fall far outside the realm of Reproductive Illness, and are often treated separately without keeping Endometriosis relevant to the treatment process, despite the 2nd World Congress on Endometriosis presentation of Endometriosis a Systemic Disorder in 2001.
How many of you are lucky enough to have a great doctor who understands you and/or your family? The majority of you reading this have never even considered this question until just this moment. It is a luxury not afforded to women with Endometriosis.
By the time the average Endometriosis patient begins to investigate alternative financial means, they have lost their lucrative careers, which inevitably leads to the loss of Health Care Insurance and the loss of their Doctor. The education they paid dearly for is all but nullified by their disease. No longer are they categorized as a successful and productive person, instead they are defined by their pain, and their loss. Any accolades they achieved are forgotten in the prescription bottle, or the Emergency Room, or the IV drip, or worse by the drugs they take to control the discomfort and pain created by the disease and its treatment protocols. After more than 10 years of treatment, we become Outliers.
So, any endeavor which brings Endometriosis and the quality of life the disease erodes to the forefront is a blessing. The fact of the matter is, it takes money to survive in our shared society.
Some of us with Stage IV have managed our disease the way we manage our careers. Our philosophies on life shift significantly. It affects our social interaction, our decision processes and our political opinions. We pick up our dignity, dust off our education and professional experience, and get back to work. We become adept at formulating plausible “almost truths” about the gaps in our work history. We re-enter Commerce and cross our fingers that we have found the right combination of therapies to allow us a productive lifestyle and the financial means to purchase the therapies to support it. All of us know it is unsustainable. All of us know we can only be guaranteed a 4-7 year run at income generation. For us, more than just the recovery clock resets to zero at each Incident, our professional clock resets as well. The stigma of illness and the significant cost to treat illness is a major deficit in the Employment Realm. Recruiters are especially guilty of this discriminatory practice.
There is no true protection for Endometriosis within the Americans with Disabilities Act of 1990 even with the updates from 2008. Within the workplace,
Endometriosis is a Discrimination Free for All. The only protection we have is secrecy and lies: our own. Our ability to lie and to protect those lies is crucial to maintaining our ability to generate income which facilitates Health Care Insurance which facilitates treatment. A vicious and psychotic cycle.
The Health Care Reform, or “Obama Care”, that is in debate by every Politician and Media Pundit puts the idea of Money in to stark focus. Without Money, or the ability to generate Money or Revenue, Health Insurance is nearly impossible to buy. In fact, without an Employer Sponsored group plan, and a significant Employment Compensation Benefit, Health Insurance is completely impossible. There is, however, Medicaid for those who qualify as low income, the disabled and the elderly. I am not quoting from the Media, I am doing it from my own personal experience with trying to obtain Health Insurance over the past seven years.
One of the most significant factors in Endometriosis, is that it can easily be classified as a “pre-existing condition”. Every major Health Insurer classifies the treatments associated with Endometriosis as “Infertility” and unless your specific Health Plan Coverage provides coverage for Infertility, the treatment options are limited to Birth Control Pills. Even the Ultra Sound and Laproscopic diagnosis is classified as Infertility related. Yes, even Lupron is categorized as an Intertility treatment. In 2000, a year after my Hysterectomy, Endometriosis was listed on every Health Care Insurance plan as a pre-existing condition and it still is as of February 15, 2011 when Insurance Agents began calling me to sell me Health Insurance. In fact, I was informed that due to my Stage IV Endometrisis, multiple surgeries, multiple Chemotherapy rounds, multiple HRT treatments and overall decline in health, I am officially uninsurable by every Healthcare Plan in the United States. The only Health Insurance I am qualified for is Accident Coverage – when a broken bone sends me to the ER or I get a bad case of the Flu. But even then, the treatment will be reviewed to determine if the broken bone is due to low bone density because of Lupron treatments for Endometriosis or if the Flu is due to a compromised immune system due to Systemic Endometriosis. Until January 1, 2014, I am uninsurable unless “Obama Care” provides free health insurance for the uninsurable.
With or with out the new Health Care Reform, the cost of Health Care Insurance is not going to change. Endometriosis treatments will remain classified as Infertility related and will not be covered without specific plan coverage. The cost of a plan will still average $400-$600 a month for a single person, and that dollar amount does not reflect the additional cost of adding Infertility to the plan. Not even the powerful Pharmaceutical Lobby has been able to overcome the Health Care Lobby in getting Lupron removed from Fertility classification, despite the drug being the #1 treatment of choice within the Medical Community for Endometriosis. Once again, Money becomes the central issue in obtaining health care. Even with Reform, the cost of health care to manage and control Endometriosis remains a quality of life issue. While Health Care Reform addresses pre-existing conditions, there is absolutely no provision to address Infertility related illnesses. Endometriosis treatment will remain classified as Fertility related and will not be covered without additional expense. No matter what politicians say, they can not escape the glaring fact that 20% of the female citizenry is afflicted with a disease which Health Insurers refuse to cover.
Instead, these same politicians pontificate on the evils of Abortion and Birth Control. May I remind my dear readers that “birth control” is the first line of defense in treating Stage I & II Endometriosis and has been proven to prevent the disease from progressing to Stage IV, or worse, Ovarian or Uterine Cancers. So it makes sense that the Conservative Christian Right be the most vocal in their demonizing birth control, what better way to marginalize 20% of the US population? By the way did I mention that Endometriosis is still the “Educated Woman’s Disease”? So in essence, the ultimate goal of the Misogynistic Conservatives is to silence educated women. If you just have some patience and wait a little while, Endometriosis will eventually kill us off, and the Right Wing Conservatives will finally have the Utopia they dream of: a society without a single educated woman. Sheer Perfection.
But I digress.
Money & Endometriosis will always be intimately connected. Awareness Campaigns have proved ineffective when women are still labeled Seekers and Drug Addicts in their quest for a cure. Discrimination against the disease remains unilateral across the Medical Community and especially within the Political realm. The Pro-Choice Movement has abandoned 20% of the female population in their myopic focus on Abortion, leaving those of us who desperately need our Reproductive Rights protected without a voice and without treatment.