Endometriosis: My Journey Through Hell (Part 1)
On a Tuesday morning in December of 2017, while visiting my parents in the Midwest, I started my journey through hell with endometriosis. It’s a completely preventable journey that continues today, involving egregious failure to care on the part of health care providers and unbelievable denials from health insurance. And, to my great despair, it’s a journey that hasn’t ended and *spoiler alert* resulted in cancer. Unfortunately, the story can be divided into two epochs: the Kaiser epoch and the CalPERS/Anthem epoch. This is part one, year one: Kaiser.
Previous to December of 2017, I had absolutely no symptoms. Today, doctors tell me it’s not that uncommon; people with endometriosis don’t always have the extreme, debilitating pain that you hear about. Don’t get me wrong, I had very painful menstrual cramps throughout my life. Sometimes I would be sent home from school, sometimes I had to stay home from work, but no one, professional or otherwise, suggested I might have it. In fact, it took almost a year of scary, life-threatening symptoms and an emergency surgery to find out I have it…and it’s bad.
The second day of my period in late December of 2017, I started throwing up. I was in incredible pain, but it didn’t feel like cramps; this felt like my intestines were trying to get something through and couldn’t. I stayed in bed for an entire day, but it seemed to get better over the next couple of days, and was gone when my period ended. I was about to start Kaiser Permanente insurance through my employer in January, so I went ahead and made an appointment for a primary care physician. As is typical, the earliest they could get me in was February.
In January of 2018, the symptoms returned with my period. They were debilitating. I threw up anything I put in, even water. I writhed on the floor in extreme intestinal pain, sure I’d never get up again. It felt like my intestines were trying to move something through and I experienced indescribable pain as those muscles contracted over and over and over every few seconds. It ended when my period ended.
Then I saw my new Kaiser primary care physician in Los Angeles in February. When I started to mention my symptoms, she held out her hands and exclaimed, “We can’t talk about that! It wasn’t written down as the reason for the visit so we can’t talk about it!” She explained that patients always try to talk about “extra” issues in visits and they don’t understand that doctors are under pressure to have very quick visits and they simply cannot talk about anything that wasn’t mentioned when the appointment was made. She literally said, “People think they can talk to me about whatever they want but they can’t!” I really thought I had mentioned it but, fine, I had trained doctors on best practice and I knew just how much of a barrier U.S. insurance companies put on the provision of care. I dropped the issue, hoping it would just go away. It didn’t.
During this time, I rented a first floor condo. My upstairs neighbor sold his unit to a company that flipped it. In gutting the unit, they destroyed ours. They let the workers, who spit on my doorstep daily because I complained about them violating the construction curfew, live in the gutted unit. They used a non-working toilet, resulting in their excrement backing up into my bathtub. There were large, gaping holes in my ceiling, one directly above my toilet, that they would peer through. This was not a good time to have these symptoms. My husband and I ended up living in a hotel for a week and then moving to a different unit in the complex.
After two more months of these symptoms progressively getting worse, I went back to see my primary care physician and begged for help. I had called immediately upon symptoms continuing the month before, but this was the first available appointment. I told my doctor it felt like something was trying to get through a blockage in my intestines. She told me that since I was still having bowel movements when not on my period, I certainly did not have an obstruction. She ended the visit by saying that this is clearly a gynecological issue and she simply could not help. Desperate, I asked for a G.I. referral. I also made an appointment with a gynecologist, in person in the same building, as soon as I left her office.
Kaiser’s infamous for wait times. I saw the gynecologist several months later, in April. My severe symptoms continued. Every month I lost at least 15 pounds due to being unable to keep down anything, even water, during my period. Having my period meant that I was seriously dehydrated during that time and the intense intestinal pain, that my mother taught me was called “peristalsis,” continued to knock me on the floor, quite literally. You may not be surprised that the gynecologist, who I can only label as “very fancy,” was not helpful. She told me to get pregnant or go on hormonal birth control. I explained that I did not take hormonal birth control, as advised by a neurologist due to migraines.
I also saw the GI specialist around that time. She decided I needed an endoscopy and colonoscopy. No appointments were available. At all. Kaiser eventually called me weeks later to schedule an endoscopy/colonoscopy for October.
Thus commenced a summer of increasingly severe symptoms during the duration of my period. But now, the pain and inability to keep anything down started to last longer and longer after my period was over. I kept losing significant weight during these weeks, all the while trying to work and live through the pain and vomiting. I called Kaiser to make appointments, but none were ever available. Finally, one day in July, I was so desperate that I begged to see anyone who was available and could see me at all, no matter how far away. I ended up in Woodland Hills (outside of LA), seeing a nurse practitioner. As much as I love nurses, this one was very dismissive. She said I probably had endometriosis but there’s no way to diagnose it or test for it and that the only way to tell is by my symptoms. She said birth control is the treatment. I explained why I don’t take birth control and she prescribed it anyway. The visit lasted maybe five minutes tops.
I did not take the birth control. At that point, I was still concerned about not being able to work due to my history of severe migraines with hormonal birth control. I had also begun to read about endometriosis and the overwhelming evidence that suppression medications, like birth control, don’t treat it. Additionally, I wasn’t 100% on giving up my fertility altogether, and many doctors encouraged that perspective as I was still relatively young and hadn’t ever even tried to get pregnant. Not that doctors understood that trying to get pregnant right now to stop my pain wasn’t an option at the time. They didn’t seem to care that my husband and I didn’t even live in the same city anymore because of our jobs. All I wanted was the pain to stop. I couldn’t even consider pregnancy at that point — I could barely think or breathe through the pain as it was. Plus…would pregnancy really be advisable with, or help remove, an intestinal blockage? Shouldn’t I, I don’t know, take care of that first?
At some point during this summer, I was referred to a fertility doctor at Kaiser. I can’t remember exactly who sent me there, but the idea was that this doctor knew about endometriosis and could help me. It’s worth noting that because this doctor was considered a “fertility doctor,” visits with and treatment from her would only be covered at 50% — a huge problem for endometriosis patients, as the experts are often reproductive endocrinologists and, as I learned later (just wait), such coverage is often denied, particularly to those with serious gynecological conditions and cancers. I waited a long time to see her and the visit lasted about 10 minutes. She was sympathetic, but she explained that unless I wanted to get fertility treatments, she couldn’t help me. At that point, all I knew about fertility treatments were that they were “assistive reproductive technology” and, like most people, understood them to be for people who tried but couldn’t get pregnant spontaneously. I didn’t know, yet, how inextricably such tests and procedures were related to endometriosis care and treatment, so I told her that I just wanted the pain to go away and to be able to live and work.
The fertility doctor referred me to a minimally invasive surgery specialist. I saw that doctor in September. By that point, I had learned about laparoscopic surgery to diagnose endometriosis, and I asked her for it. She said doctors don’t usually start with surgery and instead prescribed me a progesterone pill. I was incredibly desperate at this point, with the pain almost never-ending even after my periods, so I took the pills. They didn’t help at all.
At this point, I went rogue and started asking everyone I knew if they were connected to any doctors who they thought could help me. First, I saw a doctor at a random Kaiser hospital, one who doesn’t even see outside patients (a hospitalist), who made time to see me and really talk about my symptoms. He prescribed me Norco and Gabapentin. Neither helped, but I was grateful he was even willing to see me outside of his normal practice. After that, I ended up in the ER at Kaiser Panorama City (outside of Los Angeles) in mid-October due to my pain and vomiting. I was severely dehydrated. An OBGYN came to see me and said, “There is no way this is gynecological.”
The ER physician admitted me and tried to get me to have a colonoscopy. The problem, and why I left the hospital, even though the nurse was literally trying to force feed me the colonoscopy solution? I already had a combined colonoscopy and endoscopy scheduled that week! I told them I’d rather do that so I could also get the endoscopy, but they weren’t having it, so I had to submit several complaints about the force-feeding nurse and asked them to discharge me. They did, not without insults from my nurse, and the previously-scheduled colonoscopy/endoscopy found an ulcer likely caused by almost a year of vomiting.
On October 26th, I hit gold…well, it did cost me. I saw a non-Kaiser fertility doctor who had been an endometriosis specialist at Cedars-Sinai and who a friend suggested. I had to see him out of pocket, but at this point I had run out of sick time, was about to lose my main job as a professor, and had just lost my “extra” non-professor job because there was no more sick time available. This doctor saved my life. He said I definitely had endometriosis and that Kaiser, “…should have operated on you a year ago.” He told me that if I had been his patient, he would have sent me to a specific endometriosis surgeon at Stanford when my symptoms started.
A few days later, I was in so much pain that I called my parents and begged them to come help me. My mother came out and while she was there, I was in so much pain that my husband left his job in another city to come help me as well. I was throwing up constantly, in addition to absolutely excruciating intestinal pain. They made me drink Pedialyte even though I couldn’t keep it down, but eventually I was in such a state, and once again so unable to work, that they took me to the ER, this time at Kaiser Sunset (Los Angeles).
The attending physician admitted me and I spent 8 days on an NG tube, NPO (nothing by mouth, no food or drink), undergoing endless tests like MRI challenges that made me feel like I was going to die, being told I probably had cancer but they just couldn’t tell, and on frequent and high doses of Dilaudid and anti-nausea medication. I had a gynecology team and a surgery team. The gynecology team told me that they told the surgery team they were torturing me and to just do exploratory surgery.
On November 5, 2018, with a PICC line for nutrition and trying but failing to maintain my weight in the 90 pound range, they finally wheeled me down for emergency surgery. There, they found a total bowel obstruction that came back as stage 4 (severe) endometriosis.
After the surgery, I woke up in a strange place, with an NG tube that had recoiled from my stomach back up into my throat and mouth, hearing nurses near me say, “I don’t know who she is or why she’s here.” I tried to moan loudly enough and point to my mouth to get their attention. Eventually, an orderly saw me and brought me a bed pan, but I couldn’t successfully get their attention regarding the NG tube.
If you’ve never had an NG tube, there is no way I can adequately describe the utter hell that is a tube down your throat while you are awake and trying to live life. It’s even worse when it’s coiled up in your throat and mouth. Still, no one helped me; they kept saying they didn’t know who I was or why I was there, and by that point I had been lying in a full bed pan for hours. It turns out the hospital had literally lost me. My family and the hospital personnel had been trying to locate me for hours and no one even knew if I made it out of surgery alive. Finally, someone must have decided I’d been there too long and told the right person…I’m actually still not sure how they found me. My mother and husband showed up, they figured out what was going on with my moaning and pointing to my mouth, and the nurses re-inserted the NG tube, to my great dismay.
The surgery team only removed the bowel obstruction. They did not excise (cut out) any of the other, extensive endometriosis tissue. I found out months later, while reviewing my records for the nth time, that they did remove my appendix. After major intestinal surgery, the goal is to have your system “turn on again,” as the surgery stops it from working. In other words, you’re on high alert for a bowel movement. It took a few days, during which I could barely tolerate the NG tube (they had to give me Ativan and my mother said later she was afraid I’d end up pulling it out myself) and I remained NPO.
Having that NG tube was like perpetually choking. It triggered a panic response in me almost constantly. At some point during all of this, the surgeon I had seen came to visit and apologized. She literally said, “If I had only known…”
I only stayed in the hospital for a couple more days once my system turned back on and I was allowed to eat and drink again for the first time in weeks. They let me out early because I was going to lose my job as a professor and my health insurance if I didn’t return to the classroom. Plus, as a vegan, they really didn’t have any food I could eat (all they had was a greasy vegan black bean cheeseburger and no way was I going to eat that in my condition). I returned to the classroom a few days later, making HR extremely nervous. In fact, the main HR rep. said, “You need to take care of your health! It’s too early!” Yes, it most certainly was (I had to wear stretchy clothes I was okay bleeding through), but it was return or lose my job and health insurance.
I rented a small townhouse during this time. While in the hospital, I asked the landlord to put a handrail on the steep stairs, as I’d had abdominal surgery. She said no. I insisted. She said if I wanted one, I had to pay for it. I explained that my elderly parents were staying with me to help and discussed potential falls and liability. She finally relented and added one. When I got home from the hospital, we received a notice that she was terminating our lease and we had to leave within 60 days. Let me tell you, moving is a fun way to recover from abdominal surgery.
I gave up on Kaiser. I returned to the non-Kaiser fertility doctor, out of pocket, in late November to review my options after all of this and now that I had a firm endometriosis diagnosis. I decided that I simply must change insurance, so I signed up for a plan that my employer’s Health Benefits Unit promised would get me better care than Kaiser and was indeed “the Cadillac of plans.” In fact, one representative said, “If you can’t get care with this plan, you can’t get care at all.” Little did I know just how prophetic that statement was (see subsequent installments of this series).
I can’t tell you how many times Kaiser doctors told me, “You don’t have a blockage” in response to me saying, “It feels like there is a blockage; like something is trying to get through but can’t.” I can’t tell you how many times I asked about endometriosis. The fact is, I asked about both a bowel obstruction and endometriosis from day one. This could have been prevented. It cost Kaiser more to wait for it to become deadly, and it gave me medical trauma as well as enormous physical, psychological, financial, career, and related loss on my part.
Unfortunately, this is the reality of having endometriosis in the U.S. This is what countless people with the condition have gone through and, I fear, will continue to go through if stories like mine continue to be the norm in this country. It’s estimated that 1 in 10 women have this condition and of those women 1 in 4 die by suicide. If I could give you just a second to experience the pain, after reading my story, I’m convinced you’d all understand why someone with this condition would take her life, especially when experiencing malpractice and neglect of this magnitude.
Lawyers and others, even my employers (more to come on that fun), continue to ask me why I didn’t sue Kaiser for malpractice. The answer is simple: CA has a one year statute of limitation on malpractice lawsuits. I didn’t know about that and I was so broken down and busy trying to get treatment for the condition and its related health consequences, and deal with denials from my new insurance, that I simply didn’t have the capacity.
Herein lies the tragedy: My employer, everyone, keeps telling me to “just get new insurance.” I did. I got the “best plan we [employer] offer” and it has been 10 times worse than almost dying from neglect and having a hospital lose me after emergency surgery. Yeah, it’s that bad, and the next installments of this series will attempt to explain the indescribable nightmare that this has become. Didn’t think it could get worse than the above? Stay tuned.
