Dealing With Endo.

Endometriosis. The invisible illness that affects AT LEAST 10% of women in the world. I am part of that 10%. I have been a part of that statistic for 9 years, but only found out about a year ago.

For those of you that may have found my page and maybe don’t know much about Endo, here’s a little sneak peek into what my life looks like with the disease. For those of you that do know what Endo is, I’m so glad you found my page, and I hope you feel less alone through my online trauma dumping :) 

The date is January 29, 2024. I’m working on all of 3 hours of sleep, if that. I’ve pooped enough for the entirety of the month, but in one night, courtesy of the bowel emptying prep (my biggest enemy). I jokingly tell people that if someone ever captured me and needed to get information out of me, they should just threaten to have me drink a carton of the bowel prep. In a handful of hours I’ll be wheeled into an operating room to receive my first laparoscopic excision surgery. 

I remember excitement, dread, fear, and nausea all corrupting my system leading up to the surgery. All I wanted was an answer, and this was my first clear shot at having that closure. 

There’s nothing worse than being held captive in the hospital waiting room, hooked up to an IV, knowing that they're about to be digging through your reproductive organs any minute now, and praying that they find SOMETHING wrong. Oh wait, yes there is something worse, it’s having these symptoms for 8 years, and only now having them addressed. 

When I woke from surgery, I was in a loooot of pain, mustering “I need meds” to whoever could help me, while still very much unconscious. I woke up again, hours later, with the first question being, “Did they find it? Did they find the problem?” 

The next few days weren’t all that bad. Quite a bit of pain with sitting and standing in the abdomen, a lot of gas pains in the back and shoulders, and not a lot of mental coherency. Fun fact, I actually took my winter quarter midterms less than 24 hours after my surgery and fully sedated on narcotics. Fun fact #2, I did not pass those exams, but I still graduated, so a win is a win. 

As the pain started to sync into routine feeling, the emotional waves surged to the forefront of my attention. I cried for my 14 year old self, confused and in pain, dismissed and not taken seriously. I grieved my future of uncertainty with a family, with a healthy body, and a new diagnosis. I loathed the insecure bodies preying on my weaknesses, laughing at my conditions, and ignoring empathy at all costs. 

9 years of trauma I didn’t realize I had pent up, finally released after a 6 hour operation. Life after my diagnosis would never entirely be the same again.  

The emotional impact that chronic health conditions create for its inhabitants isn’t talked about much. I think one of the most important steps in dealing with Endometriosis is radical acceptance. I refer to my life in BE and AE - before endometriosis diagnosis and after endometriosis diagnosis. From ages 17-21 my life was chaotic, busy, and formative. These years also did include a bit of undiagnosed, questionable symptoms, but nothing compared to ages 14-16 and 21-present. 

Radical Acceptance:

I’ve spent hours denying my current state and decaying in the abyss of depression, cursing invisible enemies for the fate I was dealt. Yes you can be angry. Yes you can be sad. Yes you can be emotional. But be intentional with these things. Let yourself feel and then move on. You owe it to your body to take care of yourself. Reliving old habits and letting obsessive emotions control your present isn’t going to solve your situation, so radically accept it. This term “radical acceptance” comes from a mindset skill commonly practiced in DBT therapy contexts. I was lucky enough to learn about radical acceptance from my therapist a few years back. 

One of my notorious “crash out” thoughts is that if doctors actually listened to me in high school, I would be a lot healthier now, and not nearly as burdened by my Endo/other health conditions. Yes this is most likely a true thought, but if I sit in this pain, the past still won’t change. I’ve learned from my fixed past, and decided to inspire others to not have the same situation happen to them. 

This goes for symptoms too. Radically accept the day you’re having and the way your body is feeling, THEN offer yourself the help you need. We don’t necessarily get a say in when our symptoms will flare up; could be during a holiday celebration, date night, girls night, or a work meeting. Accept what you’re feeling, then act on it. 

Acting on your flares:

Offering yourself help during a flare of symptoms could be as “simple” as communication. Messaging your partner, friend(s), or superior, that you’re experiencing ___. If people are openly aware of your situation (having a health disability), they should be pretty understanding. If they aren’t, then that’s when you have to reevaluate the people and community you’ve surrounded yourself with. This is all waaaaay easier said than done, but it is still a very crucial part of dealing with Endo.

Another way I handle my flares is by being as prepared as I can. I keep a bag on me at all times that has any medication or supplement I may need to get through a flare. My flare bag has Plant Therapy essential oils, extra pads and tampons, RAEL temporary heating patches, the Good Patch vitamin patches, imodium, nausea tablets, and advil. When I have my flare bag with me I feel an odd sense of relief.

Warmth is something that can tremendously calm Endo related pains. Warm baths, saunas, heating pads, and even warm meals. The heat experienced from these activities can increase blood flow, reduce pain and even inflammation, and calm your nervous system down. 

Preventing Flares: 

As of right now, there is limited research on Endo. This includes limited resources and knowledge on how to effectively STOP the spreading of Endo adhesions and tissue. However, there are ways to SLOW the spread of Endo and minimize the severity of flares.

There are a few ways to help manage the Endo spread. They all pretty much revolve around lifestyle choices. 

Diet: There is an indication that certain foods aggravate Endometriosis due to their compositional nature. For example, processed foods tend to have excess ingredients and chemicals as well as sugars, which are known to cause inflammation. Considering Endo thrives on inflammation, it would be wise to minimize your intake of processed foods. 2 other triggers are Gluten and Dairy. Dairy contains a high amount of estrogen in its composition, and being that Endo has a relation to high estrogen levels, boosting the spread of the tissue, dairy can be an instigator in this process. 

Activity: This one is tricky as everyone’s body responds differently. Keeping a moderately active lifestyle has indicated a decrease in pain and discomfort levels with Endo warriors. Listen to your body and tune into what kind of activity you might benefit best from. Being active doesn’t mean you have to go run a marathon every month. By all means, do that if you’d like, but being active can also mean light yoga, walks around the block, stretching, swimming, hiking, etc. 

Stress Management: Now that we know that Endo thrives on inflammation, stress can also promote Endo growth. Being mindful of your body and emotions on a day to day basis can help you manage your physical and mental components of chronic health conditions. Mindfulness activities might look like reading before bed, stretching first thing in the morning, meditation, an allotted time spent outside in nature, gratitude journaling, etc. 

I’d highly recommend taking a look at the books Know Your Endo and Heal Endo. They both go in depth on handling Endo symptoms from different points of view and discuss similar topics to this blog (lifestyle, diet, flares, etc).  

Endo really is a full body disease. And a disease of limited research and representation. If you have any questions or would like to discuss your personal situation and establish a helpful routine tailored towards your personal routine, feel free to message me or book a session through my BIIG program. I’m always here to help inspire and empower those navigating their health journeys.

As always,

Here to help you Rays Your Voice, Rays Awareness, and Rays Your Vibe. 

💛 Ray