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.”

But you do matter. I matter. We matter.

When writing a facebook status likening my struggle with intestinal endometriosis to an infamously violent creepypasta focusing on insomnia, I realized, truly, how much damage this is doing to me. To keep consistent with unnecessary (and probably misleading tbh) technicalities, it isn’t the endometriosis itself. It’s the wreckage it has caused. I have to make a choice every morning not to go into the darkness again. Every day, I have to be extremely aware and actively ensure that I don’t celebrate my weight loss or allow others to, because I have to remind myself that a number on the scale is not tied to the value of my life because I used to tie it to the value of my self, and most (including many of the doctors I have seen) think that I am “still too overweight” to feel the effects of malnourishment, and that I should be celebrating the weight loss, in turn then celebrating the fasting mandated by my wrecked intestines; that I should ignore the swelling from my body trying desperately to hold onto every drop of water it has magically been able to keep down during the past week. I am often dizzy, lightheaded, physically unstable when I do get to be mobile, and my function is impaired. At my own doctors’ advice, I have to every so often go to the ER to get IV fluids to maintain enough hydration to survive. Last time I went they told me to discuss a feeding tube with my PCP.

 

I stil have not received any effective treatment and have little hope I will ever get it.

 

Because of this, I constantly have to reaffirm my value as a human being, the value of my wellness, and the value of my life, because these things do not seem to matter to the people whose licenses seem to be respected more than my health; who have a license that people agree is powerful enough to say to my face that I am untreatable, because my pain is my fault, or my pain is psychogenic, or that I am neglecting myself because I won’t take the diverse collection of unnecessary psychotropics every day anymore that gave me tremors and worsened my real medical condition — but on record helped seem to constantly erase any credibility I may have ever had.

 

They have put me on so many psychotropics. When it didn’t work, they upped it until they legally could not (in most cases, anyway), and when increasing the dosage was no longer possible, they added more or changed to other psychotropics. The psychotropics didn’t touch my real pain because even in the case of most clear-cut mental illnesses, they don’t reah that core. So for me, who has C-PTSD and inestinal endometriosis, meds like Mellaril, Ritalin, Adderal, Haldol, Prolixin, and Risperdal did not help. They could not take the nightmares away, let alone the 10 day debilitating periods or the chronic pain which helped to isolate me as a child. Even Welbutrin XL, Prozac, Klonopin, Remeron, Clonodine, medicines intended to help treat depression, anxiety, and insomnia did nothing to heal me. These lists don’t cover half of the pills prescribed to me by uninvested doctors, and the years I was in the psychiatric wards most often were the same years I was often prescribed to take more than a dozen pills a day.

Continue reading “But you do matter. I matter. We matter.”

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”

Challenging misconceptions about endometriosis

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.

Endometriosis is underdiagnosed, taking an average of six+ years for diagnosis but still affecting at least 1 in 10 women. This is due to bias and misunderstanding, esp from doctors. One big misunderstanding is that full hysterectomies, (removing uterus and ovaries), are a cure for endo. There is no cure, and they often heighten the risk for heart disease and cancer later in life for young women. Having endo in itself and not completely and correctly removing it has also shown to increase risk of breast and ovarian cancer. The longer it is the body, the likelier that will happen.

Endo grows its own estrogen and can grow on and spread into anywhere in the body (even the brain), and there are actual cases of men having it. That being said, you don’t need ovaries or a uterus to have endometriosis but often that’s all GYNs choose to focus on, using birth control, full hysterectomies, and other often ineffective methods in what often results in devastating attempts at managing endo.

Another misunderstanding is that only women of a certain age can develop it, but because it grows its own estrogen, it doesn’t require estrogen from ovaries to develop or worsen.

Birth control helps some, but for many, (including me), it only worsens things. Like severity and symptoms, treatment efficacy varies, but the one that is most consistently effective (when done correctly) is excision.

Excision as a treatment for endo came out in ’91, and even now, only ~150 GYNs out of the US’s ~160,000 are properly trained in it.

A damaging number of GYNs in the US still believe endo is caused directly by the uterus and/or ovaries and that it can always be seen through ultrasounds, MRIs, etc. Both are untrue. While some endo can show up on scans, it’s uncommon that it’s seen that way, even when severe. The only sure way to diagnose it is a laparoscopy.

Main (but not all) resources: CenterforEndo.com, Endofound.org, Nancy’s Nook Endometriosis Education (fb group run by licensed retired nurse, Nancy Peterson), Endometriosis Foundation of New York, and MyEndometriosisTeam.com.