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.”

My Endo Story

This (endometriosis) is what has kept me so absent from this blog. It is time I talk about it in-depth. I am creating a fundraiser to help pay for my treatment. Please read, share, and donate if you can, especially if you want to see this blog get going again. Your support will help greatly in making that happen. Thank you so much.

I have been experiencing 10+ symptoms of endometriosis since my first period at age 11 but have had these problems constantly shrugged off. Often the responses would be “periods are just naturally painful,” “these are regular girl problems,” etc. For this, I was often put on birth control but found it unhelpful. The Ortho Evra patch worsened my acne to extremes to the point where I have scars all over my face despite being careful to never touch my face with my hands, let alone scratch or pick. I often bled on pillows at night because the acne was so bad. In 2017, I was prescribed pure estradiol to combat hot flashes and lactation, but it seemed to just worsen my problems.

 

At 17, I had a full PTSD break when repressed memories that I had long been only somewhat aware of (but were silenced by non-professionals and medical and psychiatric professionals in childhood) brutally resurfaced. Because of this, many of my symptoms have been blamed on PTSD. I am aware there are definitely crossovers, but not all of my symptoms can be only PTSD related.

 

I have begged for a laparoscopy for at least three years, as I have been concerned about endometriosis. I had a tubal ligation at 21 because I knew with my hormonal problems (and the other problems they told me I had but never quite matched up), a pregnancy would send me totally over the edge and thought naively that perhaps maybe a tubal would help manage some of these problems as well.

Continue reading “My Endo Story”

All we hurt when we hurt / The universal language

There is an importance to healing I cannot stress enough. Because I was so affected by traumatic abuse so early in childhood, my life, identity, and behavior have all largely been shaped by pain. Truthfully, I challenge the notion that even human beings from seemingly tamer backgrounds are not shaped largely in part by pain. When going over these sentences, I thought a more accurate description might be to add pronouns to these sentences — add perhaps “my” and “their” before “pain,” but that would only distance myself from the ultimate point. There are many layers to this post as there are many layers to every person. Layers vary and appear different. They can manifest differently, speak in different tongues, dress in different threads, dance with different motions, and while sentient beings all hurt in different ways to different severities and we express those agonies in different behaviors, perhaps the greatest irony of all is that the most universal element sentient beings share is what often isolates us most — pain.

Physical pain or severe physical discomfort, at their most banal, tell us something is “wrong.” A bone is broken, and it needs to heal, or a part of our body is exposed that should not be exposed — in the case of extreme cold or extreme heat or a wound — or that not enough blood is getting to our heart or that not enough oxygen is getting to our brain. Prolonged inactivity can also cause physical pain or severe physical discomfort because that in itself tells the body something is wrong and can make things go wrong further within the body. People struggling with their mental health often get caught in this cycle, because already we’re usually struggling with debilitating stressors (and chemistry).

It is important to note that there are medical conditions in which people have a total insensitivity to pain, however rare, but even in cases of extreme dissociation or Antisocial Personality Disorder (sociopathy and psychopathy) where emotional range can become limited, there is a current that makes us universally one, even if separating us in terms of our behavior or reactions to it: pain felt by the soul even if not always the body.

Continue reading “All we hurt when we hurt / The universal language”

The Why (updated 12 May, 2018)

Update 18/12/16 20:03: My friend is alive and okay. 🙂

It is 02:14. I cannot sleep. There is noise in my head and at my fingertips. Voices in different tongues, languages that cannot speak of happiness, where “happiness” has no dictionary wedge, no page, no meaning. I may have lost a friend tonight. So this will be about things I should have told him.

For those of you who have been reading my blog, you know that I used to suffer from chronic suicidality. I used to tell my therapists I have four “moods:” 1. mildly suicidal, 2. moderately suicidal, 3. severely suicidal, and 4. urgently suicidal. #4 is hospitalization. #2 was the most typical on an average day until April 2016.

Even so, every day, I have to make the choice to survive. If you’re familiar with mental illness (whether from chronic pain, trauma, both, or otherwise), this may ring too true. I say “too” because this is a reality many of us must brace ourselves for each night we fall asleep. We have to say, “If I wake up tomorrow, I must continue the fight.” How hard it is to sleep when that echoes in you! It is even harder to get out of bed and face the day when you’re disarmed for the battle.

That’s why the word “why” and its answer are so important.

What is purpose?

Continue reading “The Why (updated 12 May, 2018)”

Bullying vs what people actually go through in school

First, let me state:

I have never liked the term “bullying” when it comes to a student’s peers. It diminishes the effect of their abuse and harassment. There are definitely an infinite amount of “grades” (as in severities) when it comes to “bullying,” but many of these “grades” are enough to damage a person. I understand we are all responsible for our own actions, but even in CBT the general consensus is that you can control your thoughts and invariably take charge with your feelings, but feelings themselves are natural and often do what they want.

Continue reading “Bullying vs what people actually go through in school”

The importance of a “real” bucket list

As a disclaimer, I’m going to iterate: There is no one thing that will help everybody, and one individual thing won’t save your life. But this is something that has helped me, something that is vital to me, and maybe something that will help you as well.

Continue reading “The importance of a “real” bucket list”

Always darkest

I don’t like getting up early right now. Right now, I don’t even like getting up at all. Reopening wounds in therapy last Wednesday was tough. Being in a triggering situation last Thursday was tougher. PTSD is a hypersensitive gun right now, and I’ve had two psychotic episodes in the past two(?) weeks. I don’t know. Everything is running together.

It’s times like these that the positivity is so hard to hold onto or even remember, and of course, it’s times like these when I need it most. I get the “c’est la vie” track stuck in my head, and the suicidality starts back up, and before I know it, I’m lost in a zoo where all predators are loose and hungry and I don’t have a directory to find my way to safety.

But I’ll get through it.

I must remember that.

So many suicide attempts and so many days like this and so many hospitalizations, and I’m still alive. I don’t believe in “plans” or that “everything happens for a reason.” I’m honestly just really hard to kill, it seems.

But that doesn’t change the fact that I’m still alive.

My self-purpose is that I’m here to make the world better:  To inspire and encourage and love and express and strengthen and enlighten all those around me, as well as myself. That’s what I want to do. I want to live my faith in people. I feel so separate from the world, so cut-off. I feel angry and bitter and cynical, but I know the hurt and the damage are at the root of all of that. Because I’ve also seen human beings capable of beautiful, strong, and compassionate things. There are figures in history who prove me right. There are people every day who prove me right. I think at the core, people are born selfish because that’s how people survive, but I don’t think that means people are condemned to selfishness. Like colorism, misogyny, and other prejudices, selfishness is something we must commit to undoing. Ultimately, you still must have great significance to yourself and be addressing your own needs and fighting for yourself. But there is a difference between selfishness and survival. Sometimes it’s a gray shaded area, but I believe there is a strong distinction most of the time.

I don’t have unrealistic expectations. I know I cannot save the world; I know nobody can. And I know that even if it were possible, one would have to save themselves first. People en masse are easily manipulated, and mobs appeal to a hubris beyond comprehension. We can’t control anything or anyone outside ourselves, truly.

And why would you want to? Really? I wouldn’t mind the pain so much if there were less of it. I think pain is vital to growth and development. After all, why would someone invent a better way of doing things if they were completely content with the way they were doing things in the first place? but the pain is massive. It’s hard. Stifling. Suffocating, almost. Just breathing in a world like this feels impossible sometimes. Everything hurts.

But there are good things. Always, always, always. There are beautiful things. There are beautiful people. Beautiful stories, good stories. Inspiration. The world is a sick place, but the diversity and creativity and beauty–often tucked away in details–are important to note.

I remembered just now why I used to like early mornings:
Even in this summer heat, dawn is important to watch.