My Endo Story, Pt II: Surgery was a success. Now, to live life.

Knowing your real worth, understanding you have a right to receive informed and compassionate care, and actively learning about and speaking up about your illness(es) and essential rights are integral to your survival.

And not just yours.

Note: Some of the links go to specific cases and while my intention is compassionate, I understand if you want the links to you or your loved ones’ cases removed and will do so at your request.

On the 25 of July, 2018, I under went a laparoscopy accompanied by excision surgery. I had a complete hysterectomy, meaning that while thankfully both ovaries were kept, everything else was removed – the tubes, cervix, and uterus. This was done because adenomyosis was confirmed, as well as endometriosis, which can cause ovarian cancer[1] in the long-term. Most ovarian cancer, the name being a misnomer (as the term for many women’s issues are due to lack of research and concern), at the root, has been shown to begin in the tubes.[2] Consensus is that taking the ovaries create unnecessary risks, and since endometriosis grows its own estrogen — something most gynecologists don’t know (and often don’t care to find out) — the ovaries have really nothing to do with its recurrence[3] – any endo (a single cell) that is left is what causes symptomatic recurrence. The lead surgeon, among the best in the world, assured me that all of the endo was almost definitely excised. I believe it. Because since the surgery, the only pain and discomfort I have had can be traced to normal post-op reactions. Up until surgery, I was having many endometriosis symptoms (not just pain) constantly — that means without interruption, not just monthly, weekly or daily — for almost a year. Prior to that year, I still was experiencing three or more symptoms at any given time since I was, at the oldest, five years old. There are a ton of symptoms that widely vary, including with which type, but given repeated sexual trauma as a toddler, it is likely that this is why I started showing symptoms prior to puberty. My case substantially supports part of Meyer’s theory over the two others in terms of the pathogenesis of the disease.[5]

 

My appendix was removed also due to endometrial involvement, and as I suspected (because I could literally feel it internally), there was a concentration of endometriosis under my left ovary.

Luckily, I did not have to have a bowel resection and only stayed one night in the hospital.

Medically cleared recovery after a surgery like this generally requires a full two months. Until mid-September, I am medically advised not to lift more than 10 lbs (much to my furbaby Oskar’s dismay – or rather mine, I guess – he tolerates being picked up but isn’t a huge fan of it), am discouraged to work my core a lot, and of course, cardio like HIIT, jumprope, and running are out of the question right now. Due to the removal of my cervix, I can’t swim, either, (which sucks, but it’s a small price to pay for my intestines not falling out or not getting infections). Thanks to medicine, I got through a clinic independent of the horror show network of doctors and hospitals I’d been previously saddled with, and I was starting to get into yoga, which I plan to return to with modifications. Thankfully, I rarely need the medicine – or any – now, although not completely (yet). I am continuing to take certain supplements, as even though it was very likely the endo depleting my vitamin B[6] and D3[7] stores, those are crucial for well-being, and it will take some time anyway for me to become nutritionally whole. I will also finish my bottle of turmeric (and may continue taking this supplement as well) and while I won’t be extremely restrictive with my diet, I am going to continue deeply limiting my refined sugar intake (a known inflammatory) and dairy. The doctor, while a lead surgeon in this field, is fallible like the rest of us, and being cautious will also slow the chance of recurrence if there is any endo left. Refined sugar is also, simply, not healthy regardless, and the benefit vs cost of dairy is arguable, not just in terms of individual health but global and environmental, too. Beef is another thing I’m not keen on consuming any more of, for both reasons as well.[8] However, as noted in the important sequel to the aforementioned article, one should also note that certain alternatives  (e.g. milk from almonds which uses a ton of water and land or milk from cashews which can easily burn – and mar – the hands of workers[9]) or strict veganism aren’t necessarily the best options, either.[10]

Just 3 years ago, I was still, essentially, living in and out of psychiatric wards. I was on multitudes of high dose psychotropics, none of which seemed to make me feel better (at all), not in terms of energy, happiness, nor even logic/orientation. Up until recently, it seemed to be agreed upon by healthcare providers that my pain, fatigue, and depressive symptoms (that I’ve experienced and exhibited since at least five years old) were indicative only of mental illness, and while diagnosed with fibromyalgia at 17 and regular doctor visits, there was virtually no physical aspect that they saw that could be making me sick.

 

One story is not all stories. But I do wonder, honestly, out of the “1 in 5” NAMI statistic for American adults grappling with mental illness,[11] how many have underlying physical conditions that are undetected or overlooked and largely the actual source of their symptoms. For example, any disease that messes with the endocrine system (e.g. hypo- or hyperthyroidism, reproductive diseases, diseases affecting the pituitary gland) can easily look like a mood disorder to a psychiatrist or a medical doctor not looking hard enough. I truly believe most of the world is deeply unhappy, leading to unhealthy behaviors (which then further contribute to deep unhappiness.) I also truly believe that most mental illnesses are real, and that psychotropics can be vital to helping break the sickness cycle that can otherwise truly be a catch-22. It should be noted that some of what used to be thought of as mental illness was simply bigotry.[12] And it seems, a revolutionary thought nowadays, is that an unhealthy person with unhealthy behaviors (that are even very self-destructive or very destructive) is not necessarily mentally ill. I caution others not to fall into the trap of thinking that just because you can’t understand someone’s actions doesn’t make them mentally ill. This exact line of thinking is why the insanity plea is so controversial when in reality it has (and should have) extremely rigid requirements.[12] The same line of thinking also fudges culpability and demonizes those with diagnosed illness. (Currently scoffing at “Many criminal defendants suffer from mental illness” found in that textbook article – 1 in 5 American adults have a mental illness, states NAMI. A gentle reminder that casual inference is dangerous.)

 

Speaking of inference, my hallucinations, I’ve come to learn, were manifestations of my C-PTSD, disspelling former diagnoses of schizoaffective disorder and other various erronious diagnoses paired with the phrase “with psychotic symptoms.” The NP who told me I was “untreatable” after two months of “working” my case even said at one point she was considering a diagnosis of schizophrenia. Because mental illnesses seem much more abstract than physical (and are largely misunderstood even by those in the field), symptoms can vary greatly from person to person. My C-PTSD began at an age in which people are expected to have imaginary friends for a couple more years. Add the extremely unnecessary Adderal (and other ADHD meds) I was put on for years prior to the age of 11, and the fact that I was seeing things — but knew it — should not be a surprise.[13] Endometriosis, a medical illness, is similar in being completely misinterpreted even by experts in the corresponding field; it is poorly researched, poorly funded, and not the concern of most OBGYNs who are likelier in the field to care for fetuses than the breathing, fully formed women who carry them.

 

Doctors have given me sheets of diagnoses, but until this year, I never had one given to me by a doctor that aligned well with my symptoms. All other diagnoses had to be crammed and manipulated into shapes that only resembled my symptoms and situations, certain crucial criteria being ignored, both criteria of said wrong diagnoses and criteria that I exhibited myself. To this day, I don’t know what did more damage: the subsequently wrong psychotherapeutic approaches or the fact that for years I was more medicated than a long-term in-patient sufferer of paranoid schizophrenia. I fear I may know the answer to that much more clearly in time.

 

My now-formal diagnoses of C-PTSD (better described and understood as “complex”  but billable as “chronic” – yes, monetary purpose is what the DSM primarily serves) and endometriosis both started out as self-diagnosis, proving that personal research of symptoms when done cautiously and consciously can easily be vital to (self-)advocacy in these industries. Support and additional narratives from those who have suffered from the same conditions can be helpful, too, as cautionary tales may help protect and guide you when navigating through these industries.

 

For the past year, I had been wasting away in front of healthcare professionals: vomiting, starving, parched, sobbing from the pain, and in April, literally dying, and there was still a clear lack of value they placed on my health, the reality of what I was going through, and, quite honestly, my life. One story is not all stories, but I do think most people would be shocked to know how unique my story is not.

 

During my crowdfunding campaign, I expressed wanting to someday found an organization to help pay for medical expenses for the many others like me whose endometriosis is habitually ignored by doctors who lack both the education and concern to “do no harm” and cannot afford proven effective treatment from the doctors who are vetted to be strong in both by those of us affected by the same disease. I do not have the money to do this now, but I have the drive. I have the ability otherwise and availability. These industries need to change, and clearly the healthcare industry (at least in the US) is more fluent in finance than it is in a woman’s right to live.

 

I have echoed before that endometriosis itself is not itself fatal, but that’s only because on-record, it is considered non-terminal. Never mind that symptoms can include pneumothoraxes, causing the collapsing of lungs in the case of thoracic endometriosis,[14] or fatal dehydration and anorexia (not nervosa but rapid, significant weight loss due to lack of nutrition itself). Never mind that endometriosis has been linked to cardiovascular problems and disease, as well as various cancers. Never mind that we also don’t fully know how much more severe this illness can be because while 1 in 10 women[15] are estimated to suffer from endometriosis, women’s pain is often not properly addressed, even by gynecologists.[16] And of course, not to mention, also, that the lack of access to compassionate treatment can convince a woman that her symptoms are indeed psychogenic, leaving her to a life of psychotropics that can cause fatalities and disabilities on their own, and that, additionally, there have then, unsurprisingly, been suicides linked to endometriosis, because being sentenced to only a half-life, tied to your bed by pain, unable to feel productive or spend time with loved ones would definitely factor into severe depression that those with endometriosis are already predisposed to due to its effects on essential nutrients for brain health alone.[17]

 

So, having endometriosis is not in itself a death sentence. But undiagnosed or unchecked, untreated, and mismanaged, a severe case (unrelated to stages which, again unsurprisingly, only indicate level of threat to fertility) can indeed result in death, and the healthcare industries are where the fault must be held. A lack of accountability results in a lack of growth.

 

My endometriosis almost killed me. I take responsibility for my suicide attempt and while I did feel hopeless and cornered into making that choice, it was still the choice I made. Not receiving effective treatment for so long, however, was not my choice. Being unable to eat for months and vomiting daily (in late May, I was vomiting stomach acids mutliple times an hour) for a time considerably longer were not my choices, either. Not getting a diagnosis after asking for a diagnostic lap (the only way to definitively diagnose and/or rule out endometriosis[18]) for upwards of four years was also not my choice. Being repeatedly told my real disease was symptomatic of mental illness was not my choice. That being said, in April, choosing to kill myself felt like the only choice I had left. As I literally watched myself leaving my sick and internally battered body, it became clear that despite my situation, there had to be hope. Part of that hope was knowing that if I could push myself back into my body, I could potentially be one of the last women endometriosis might kill in the USA. I knew if I died, especially by my own hand, the industry could wash their hands clean of my blood – and continue to wash the blood off of their hands of others both before and after me.

 

Please understand: It wasn’t, ever – and still isn’t – the spirit of vengeance that brought me back or that keeps me going, but instead the spirit of love: No one should have to suffer like this. No one. And especially not for the reasons so many have: bias, misinformation, and lack of accessibility.

 

I’m only a little more than one week post-op and there are times the associated pain and exhaustion does interfere, but I have had no endometrial pain or symptoms since surgery. I am extremely lucky, having had my first endometrial surgery (including the diagnostic lap) at the Center for Endometriosis Care. My father, taking out loans and making his own sacrifices, has helped foot most of the bill, and donators all over the world helped us pay for transportation and hotel. In this, I am immensely lucky. Without these contributions, my two options were my last and impractical long-term: a limited life on hydromorphone (Dilaudid) to deal with the pain until I grew tolerant or my condition, complete with many other symptoms than pain, worsened beyond any management again and/or being fed through a chest port (TPN) just to stay alive and alive barely. It is no leap to say these contributions saved my life, as did the support I got from the very few people in my life who didn’t minimize and/or ignore my illness.

 

One of the most essential tools of oppression is convincing an oppressed people that rebelling won’t matter, and the most effective way of doing that, even more effective than silencing individuals by death, is convincing a whole group of people that they themselves don’t matter. Oppressors tell us we are unimportant and then dictate: Why speak if you have nothing important to say?

 

Again, I say I’m lucky. I “pass” as white European in a country where Latinx people, even of largely European descent, are vilified and made into an “other.” “Passing” as white like this coupled with the American part of my dual by-birth citizenship definitely comes with great privilege when you consider that while white women are six times more likely to die from pregnancy and childbirth here in the USA than in Scandinavia,[19] that maternal mortality rate for Black women more than triples[20] on that already disturbing statistic. (Of course, I will never get pregnant – not because of the endometriosis itself but because the doctors long convinced me I was too sick to have, protect, and raise a child.)

 

I also am very lucky that my father, residing abroad, readily came back into my life when I asked for support, despite troubled water stoked partially by my own misconceptions. I am lucky that he loves me as much as he does, especially despite our past. I am lucky that he is in good health and just an email away. I am also lucky that he offered to help financially. I am lucky he was in a position in which he was able to do so. I am lucky that he has supported me through this crisis, because I have learned that even if/when someone loves you, they don’t always love you the way you need them to.

 

I am lucky that while many other patients who, by the time they get to the CEC, have endured dozens of botched surgeries by less informed and less compassionate doctors, I got the surgery I needed at 25 years old to almost definitely never have to go through all that I have gone through ever again.

 

I am lucky, in the USA, to have insurance. I have state issued insurance, which has paid for the ER visits I’ve needed to go through just to hydrate enough to stay alive while waiting on the logistics to get the treatment I needed when providers in the area denied my very reasonable request to confirm a diagnosis. It has I’m sure, begrudgingly, paid for my hospitalizations and ambulance trips but paid nonetheless, contributing to the wages of the EMTs who, also begrudgingly, refused to come into the building when I needed assessment because they were so sick of me. Imagine if the situation had just one or two different factors: I would not have been the first person who was killed due to the bigotry and negligence of EMTs.[21]

 

I am going to be able to live life now, to actually live life. I grew up believing I’d never make it to 15. Then, 18. Then, 21. Then, I figured I’d rot in a state hospital for the rest of my life, because that is how I was treated. How my life was valued, or moreso, how little it meant to those around me. Learning to listen to and fight for and love my body has been integral to my survival. Days, amounting to months, of having to actively remind myself I am worthy of effective treatment and that my survival and story could tell others they are, too, is how I stayed alive.

 

But not everyone knows or remembers that, especially when many of us are actively “taught” otherwise. So it is important to actively remind yourself of your actual worth, which is deserving of informed and compassionate medical care. We are all worth at least the absolute basic respect of having our pain acknowledged, and symptoms taken seriously in a medical setting. There are “hard data” factors in our medical records like our race, the sex we were born as independent of gender expression, but none of that should dictate to us or anyone else our value as people. (But just because it shouldn’t doesn’t mean it doesn’t, obviously.)

 

Creating a foundation like this, then, is important to leveling a field unjustly and historically uneven, and, of course, (self-)advocacy is beyond vital. Knowing your real worth, understanding you have a right to receive informed and compassionate care, and actively learning about and speaking up about your illness(es) and essential rights are integral to your survival.

 

And not just yours.

 

There is a lot that has to be done before this organization is in the works. Despite the help, I am still in debt, as I am currently unemployed/on disability with monthly bills. I am fortunate to already have skills and resources right now that will eventually help me get out of this hole. But for now, what I can do is once again put myself before the keyboard to log the thousands of hours of research that helped save me so that now, I can help others help save themselves, too.
All of my love.

Veronica

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