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]

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

Authenticity: Its meaning & benefit

Authenticity may hurt you, but major parts of it are accountability and self-knowledge, both of which are vital to personal, individual healing. And contributing to healing beyond your own universe, too.

“Knowing yourself is the beginning of all wisdom.”

Paraphrased from Aristotle, this concept has been key, above all others, to my personal development. For me, it is not just about identifying what you do and why you do it, but also what you can do, as an individual, to strengthen positive behaviors and reduce negative ones. Self-knowledge is not armor; in fact, it is far from it. It is not a shield or a helmet. It is calcium to edify our bones. Its purpose is to grow and strengthen in that growth; to identify and take accountability; to have compassion and respect for ourselves and not enable our vices in pursuit of doing so. True self-knowledge is the first tool in countering stunting and regression. I read an article once claiming that “know thyself” is a dangerous maxim because it indicates some kind of permanence, or “being stuck.” The article implied that this could happen because if a person has identified their values and circumstances change that contend with those values, that person will refuse to adapt because it “feels unlike” their interpretation of themselves. That is not self-knowledge. Our values, circumstances, feelings, and ideas are impermanent. As human beings, we are the most adaptable animal in the world. We are nearly limitless and have evolved for ultimate survival, even in our clawless, fangless bodies. It then makes sense that the human mind, the most significant key to our advancement, is also the most significant to our downfall.

Continue reading “Authenticity: Its meaning & benefit”

On body positivity & awareness

When someone ties their physical form to their integrity or character value, that is when they have an increased likelihood of intentionally harming their body, and devastatingly, society encourages this connection all the time. You can want to lose weight to improve your health – or gain weight to improve your health, build muscle to improve your health, etc. But when you do it in pursuit of becoming a person of “value” or increasing your worth as a human being, that is when you are really hurt inside, and you need to begin healing yourself.

I am 162 lbs now, when I was ~195 in mid-April. While to most people this sounds like a cause for celebration because society sees fat as so “unattractive” (and yes, unhealthy but that’s often secondary to the main message and for awful reasons), losing this much so soon is not healthy either, especially because of how I lost it – being unable to properly take in and digest food. I want to take this time to especially send my love to those with illnesses – of any kind, whether it be endometriosis, cancer, Chron’s, EDNOS, etc – who are overweight, lose weight then because of the illness they’re suffering from, only to then get congratulated on their weight loss when they actually feel like they are (or actually are) dying inside. It is devaluing, dehumanizing, and invalidating, and for those with eating disorders and associated thoughts and behaviors, those experiences significantly encourage the chance of related fatality. That being said, eating disorders have reportedly the highest fatality rate of any mental illness, and there are plenty of people who start out as “heavy” before literally overexercising, starving, or purging (including vomiting and/or excessive laxative use) themselves to death.

 

Note: Because of the tragic self-violence of disordered eating, I refuse to more “gracefully” word that.

 

While many people who have lost a great deal of weight are happy to have lost it, feel good about having lost it, and have lost it under medical supervision and/or through a healthy way, please always consider the possible ramifications of telling someone “Wow, you look so good after all that weight loss!” or tbh, commenting on people’s weights at all.

 

For me, today someone close to me commented in a way that was actually very considerate and was not at all hurtful to me (but validating instead). She had noticed the rapid weight loss and was concerned for me, knowing why it has been happening, and she treated it compassionately.

 

But I can’t tell you how many people have seen me in the past month and told me, “Wow, you look great now! Look at how much weight you’ve lost!” to which I must stifle a frustrated “I’ve lost weight because my body literally won’t allow me to eat and drink due to medical problems and I am so hungry and thirsty and miserable.”

 

The fact that I haven’t been able to leave the house much and so I haven’t seen many people is a true testament to how painfully common this response is.

Continue reading “On body positivity & awareness”

Finding strength in your “weakness”

Reducing the impact of a vice isn’t necessarily trying to eliminate it. We will probably always have at least a fraction of our childhood vices still in us. Instead, try to funnel it into something good, utilizing it differently to accentuate its potentially positive reciprocal.

Couldn’t sleep at all due to the endo pain but was able to fill eight pages in a random notebook with this before typing it up. Help me sleep. Please.

I have long maintained that many beautiful concepts have deep tragedies to them. I see, acknowledge, and appreciate the oft-ignored nooks and crannies of experience and of being, a strong witness to their darknesses, shadows, and the gems enveloped (or even later produced) by them. I’ve come to believe it’s part of the INFJ type, and perhaps among the reasons we are nicknamed “the Mystic” is because we are likelier to be privvy to the otherwise lost or forgotten gifts of deeper universal significance.

My personal outlook on this has taken a long time to develop. Aspect I share with others that I saw as valuable, beautiful, or forgiveable in them were not in myself. I couldn’t see my victories — small or big — as events or processes worth celebrating but congratulated others for things they themselves reportedly saw as minute gestures. Much of this stemmed from self-loathing, feelings of worthlessness and futility. I had higher expectations for myself than I had for those around me, marginally so. But I criticized my efforts, thoughts, feelings, and conduct in ways completely counterintuitive and ultimately counterproductive to growth. I was angry at myself for imagined attributes I didn’t really have or attributes I associated to others in completely inaccurate ways. I think it’s pretty normal for children and younger adolescents to make faulty connections like this. Normal but unhealthy and sadly, I’d say unhealthy habits, thought processes, self talk, etc are all extremely normal, even in adults.

Having C-PTSD and growing up with abuse from pretty much all directions however, I took those faulty connections to some pretty devastating extremes. (Trigger warning: Disordered thoughts – eating disorder + c-ptsd & casual descriptions of SI behaviors)

Continue reading “Finding strength in your “weakness””