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.”

It’s that time of year again.

So, everyone, it’s November. The eleventh month of the year. I normally start working on my Wellness Binder by October, but I’m a little late this year. 2017 has been busy and hectic and surprising. It’s been by far the most spontaneous and vibrant year of my life so far. So much pain and happiness all rolled up into 309 incredible up-and-down days. It’s been both miserable and truly a joy and really what life is and honestly should be. We can’t fully appreciate peace without knowing the violence.

Continue reading “It’s that time of year again.”

Taking my own advice 19 October, 2017

Just a quick update to let everyone know how “The Plan” is going. I said I’d start, and I’m proud to say I actually did. I tend to procrastinate and come up with excuses, especially when it comes to postponing recovery, because I’ve said before, the illnesses are hungry, and they ache to be fed. They’re persuasive. They’re angry. But I punched them in the face today.

Continue reading “Taking my own advice 19 October, 2017”

How do you break the cycle?

Many mental illnesses, like many other chronic illnesses, are often cyclical. For those of you unfamiliar with the term, this means that at times the illness softens or even goes into a state of “remission,” in which the illness is not as prominent, invasive, difficult, and/or et cetera. This is especially true with mood disorders, such as depression or bipolar disorder. I think a full “remission” is rare, but I’ve known people who have reportedly (or rather, self-reportedly) gone for years without symptoms who end up hospitalized after an episode returns. Still, many illnesses are cyclicallike fibromyalgia for example.

The uni-cycle from hell

Continue reading “How do you break the cycle?”

Taking my own advice: 03 June, 2017

A. 3 things I need to let go of:

  • the resentful, regretful, and shameful cocktail I feel over not having lived a normal childhood, adolescence, and/or early adulthood
  • the damage of interpersonal debris
  • that no matter what I do, this body will never be “enough” for my disorders

B. 3 ways to let go:

A.

  • learn to value the lessons and experiences I’ve gained through my unique journeys. Journal what I’ve gained from my life and note what is important to me and what is of great importance to me and what has made me better as a person. Evaluate the strengths and traits integral to my identity and virtues because of my experiences and learn to see them for what they are.
  • perhaps give support groups a second chance and find others who have struggled with similar experiences in which they also have not undergone normal lives. Commiserate and provide comfort to one another in ways we could not get comfort from people who do not understand.
  • recreate some childhood, adolescent, and early adulthood experiences. When I get my GED, maybe have a graduation party of some sort. Plan a party for one of my birthdays, etc. Try to have a “normal” experience, even if it is a couple of years “too” late. Maybe it is never too late.

B.

  • stop holding onto irreparable relationships. Let go of relationships that are draining, toxic, or whose problems outweigh the benefits. This is something I am getting better at but still need to work on.
  • like with point A, try to value the lessons I’ve learned, the wisdom I’ve gained; try to seek the light that the darkness may shed. Write down positive things I’ve learned and positive things I’ve gained from my experiences, positive or negative, with people from my past, and how they have shaped me to become a better and more multifaceted person.
  • surround myself with positive people. Seek positive interpersonal relationships that help uplift and motivate me. Join Meetup groups. Start clubs, go out. Do things. Meet likeminded people who are kind and supportive.

C.

  • Focus on my health and take the numbers out of the equation: Try to weigh myself less, count calories less, and stop doing “skinny mathematics.” Instead, focus on getting the appropriate amount of fuel, motion, and love this body needs.
  • Try very hard to integrate this body into “my” body; try to feel united with it and make peace with it. Stop fighting a war against myself. Think positive thoughts. Post sticky notes as reminders in the mirror if I have to.
  • Be mindful. Drink water when I’m thirsty. Pay attention to hunger cues. Eat until I’m comfortably full. Eat healthy meals. Put good fuel in, not “junk” fuel. Do good things for myself.

Throughout the course of this entry, I already cut off my hOMETOWN. I’ve started on this. I’m doing this. I have to.

Taking my own advice: 260916

Part B to Part A 260916

(I’ve decided to start chiming in on my own reactions to the advice I preach for clarification, actualization, and socialization purposes.)

So….

accomplishmentssample

Part of most kinds of recovery is about acceptance. Being aware that five things doesn’t look like a lot, I have to be mindful that I set a very short timeline, these things were difficult for me, and that is okay. I did them! (Also it’s 05:54 so I’m still a little sleepy. ;))

Please share also if you want to. 🙂

Advice for 26 September, 2016

Embrace today and use a two-minute timer (online or otherwise) to record as many of your accomplishments* as you can. Pick a timeline as narrow as today or as wide as your lifetime, but keep brainstorming for those two minutes.

*”Accomplishments” are any hurdle you’ve overcome in a positive way or the positive steps you’ve taken to overcome a hurdle, however “big” or however “small,” just as long as it fits into the timeline you set. This may include but is not limited to: ending a toxic relationship last week if last week is your timeline (regardless of how long the relationship lasted), getting a promotion this year if this year is your timeline, getting out of bed or eating something and not purging today if today is your lifetime… Be imaginative. And congratulate yourself at the end. 🙂