The last couple of weeks of March has me reflecting on my Endometriosis (endo) diagnosis I received in Nov. 2025. I have hopes this new medication will be at best a good temporary solution for me until I have a hysterectomy and can get the rest of my adhesions and organs freed up, and figure out the safest medication treatment options are for me to keep holding off more surgeries...
These past couple of days of March I have been coming out of the worst post-surgery endo flare up and was able to find some external motivation in many places of my life while also reflecting on how my four-year journey of graduate school for Social Work is nearly over.
Fun fact: endo flare ups don't only happen when people are on their period, that is just typically when it is at its worst inflammation. I have chronic pelvic pain, and part of me thinks that was only related to the multiple traumas I have experienced and have been carrying around with me for over a decade. It is all of the above, the endo inflammation and traumas.
I don't typically do these types of detailed reflections, but I really want people to understand how much of my life is being taken up by dealing and navigating the endo symptoms/flare ups alongside having POTs. Not to mention the dynamic and unpredictable nature of the symptoms.
Reflecting and writing it out is helpful for me not just to process my emotions and the past ten days but to also learn more about my symptom patterns and to actually put words to them now that I am more aware of what is happening with my body.
The last 10 days or so of March have been so difficult to navigate with having a great weekend with friends, not knowing if I was flaring up when I vomited since it hasn't happened in so long, I thought maybe with all the people I see I picked up the stomach bug. Many people were rescheduling and sickness was going around. I was also questioning if it was the endo because it felt like I had some ovarian cysts for the past week or so before vomiting...I was fatigued, depressed, had chronic pain and GI issues, so I rested for two days (for the most part, got my taxes done & did a group project virtually). I felt well enough to work on Wednesday when I realized I didn't have the stomach bug since I only threw up a few times in one day.
Thursday, I showed up to the office where I got my period and was so upset. I wasn't expecting my period for at least another ten days, it has been routinely two weeks late each cycle post-surgery. I was feeling like I was going into an endo and POTs flare up, which is typical with getting my period. Typical yet daunting and soul crushing.
However, on March 11, I accidentally forgot to take my new medication, only one dose. By the time I had realized, found the pill on the floor...nearly 24 hours later. It was too late to take the missed dose. I wonder if that has something to do with this period being the worst post-surgery, I hope it is because I don't know how I am going to make it through the next three months of school if I have to deal with this pain and these intrusive symptoms.
That Thursday, I did my best to put on a brave face as I sat through an hour of individual supervision, chatting with coworkers, a two-hour long work meeting, and then I booked it home. My symptoms were thankfully only slowly escalating throughout my time at the office.
Once I was making my way out of the office, I had a horrible pre-syncope spell in front of others that I had to mask (I don't think anyone noticed) but was able to sit down immediately. I was slowly feeling better as I sipped on water, caught my breath, and was distracted by my hilarious coworkers. I was able to make it to my car with the help of my cane that I have been using more frequently. My symptoms started to escalate even more.
Once I made it home after trudging slowly up the stairs, I totally crashed out. I was nauseous, weak, fatigued, shaky, brain fogged (cotton balls in head), tachycardic, dizzy, with my PELVIS ON FIRE!!! Endo is an inflammatory disease if you didn't know that--I didn't until recently and it makes SO much sense.
My pain was so bad it felt like I was being ripped in half at the waist and below.....I had sciatica pain going down both legs but much worse in the right that I barely noticed the left. I sobbed as I made my way to my bed to lay down, take some meds, got my heating pad on high, elevated my legs before I distracted myself with some YouTube. During these past ten days or so I only got an average of about 5 hrs of constantly tossing and turning because of the pain and discomfort. I wasn't really able to do any napping because the pain, discomfort, or symptoms disrupted sleep and I had trouble sleeping or didn't have the time.
Friday I was still feeling awful, but the pain wasn't quite as bad. By pushing myself (which I have to do often), I was able to get some work and internship tasks done from home. Then I finished reading and preparing for my group teaching role for one of my two classes on Saturday.
Friday night, I was feeling a bit better but still crappy. My depression lifted a bit, and I felt proud of myself for getting some things done. So, Friday evening, I went to my brother and his partners place, who is in her third trimester with the nephew that is going to make me (blood) auntie! I am very excited to be an auntie to a baby that is only ten minutes away! Earlier that week I was ordering some gifts for the baby shower that is coming up soon enough. I was getting emotional ordering the gifts and hadn't seen my brother and his partner for a while so that is why I pushed myself to go to their place to visit on Friday evening.
I had a lovely evening catching up with those two that I started to feel a bit more motivated with something to look forward to on top of finishing school, starting a new career and honestly, turning 30! I can't fucking wait to be out of my 20s. I am ready for a big new chapter of my life to start despite knowing I need major surgeries in the future and the many difficulties navigating that and treating the endo alongside the POTs will be.
Saturday, I slept in and woke up not feeling well still being in an endo flare up with cramps, pain, headache, dizziness, stiffness, chronic pain, and POTs tachycardia that I typically wake up with nearly every morning and just hope it goes away with meds, food, and fluids. I slowly got ready to go to class, grabbed my amazing portable heating pad I got recently that needs a better portable battery on it but other than that is perfect.
I was in quite a bit of pain and discomfort for my first two-hour class, I was fatigued, brain fogged, and glad I was able to color while we talked about the hooding ceremony that is happening because I used my voice to advocate for my mobility and other physical needs (an insanely large commencement at US Bank Stadium with ALL graduate programs plus 10,000's of guests--not accessible for me who won't even be done with my internship by the time commencement arrives, not to mention we have a final summer capstone we have to complete).
An intimate hooding ceremony two days before commencement it is, I am so excited about having this much more doable option that is smaller crowd, personal, and on campus. Proud of myself for speaking up to get this with ALL of the work I have put into school and just staying alive and supporting my clients and my people these past 4 years. Then we had two classmates give case studies which were super interesting, but pain makes it difficult to focus. Interesting case studies, critically thinking with my classmates and professor and coloring are all great distractions from pain and other symptoms.
I was purposefully trying to mask less in the first class so I would have more energy to mask and able to put my active listening presenter self on the front lines for my second two-hour class since me and two group mates had to teach it and lead the discussion, which was great but exhausting.
After both classes, my professors checked in with me, and I needed to check in with them anyway, so I felt a bit cared for with them checking in with me. Having professors and supervisors that are accommodating has really been what has helped me get through this last year and it is even more difficult than I could have imagined.
Saturday night I just relaxed and was super fatigued, took a bath and enjoyed a show. Sunday, I felt much better, still not great but overall, better compared to the past few days. I was feeling motivated after getting that in class assignment done and seeing family. I was able to get a few things done around the apartment but mostly relaxed because I didn't want to overdo it before a long work week, especially Monday. Sunday night into Monday, I got 9 hours of decent sleep with my normal amount of tossing and turning.
So Monday, I woke up well rested compared to the past week. I felt the best I had felt in weeks, maybe months. The weather was beautiful, my mood was elevated, and I was feeling motivated. I caught up with my very first professor and that also felt very encouraging and motivating, we reflected on the past four years and how close I am to being done including what I have left to do--like applying for the license.
Then I had three work client meetings, which I did find time to rest and eat a meal in between two of those meetings. I was exhausted from such a long and productive day but really wanted to see some friends, so I stopped by to hang out with two of my closest friends and their adorable two-year-old.
Tuesday (today), I woke up with a headache, feeling fatigued, brain fogged, and I had internship supervision and DBT shadowing from 10AM until 3PM (all virtual from my cozy home office). My supervisors and fellow interns were encouraging and supportive as well. Then I had worked for a few hours, until I crashed out (hit a wall of fatigue and was in POTs flare up while still dealing with endo chronic pain and getting over period symptoms too).
What is so fucking irritating about having chronic & dynamic illnesses is it interrupting different parts of your life including feeling motivated, encouraged, any comforting or uplifting feeling just crushed. It feels impossible to not let flare ups crush it, and the internalized shame and grief that comes with that. I told myself it would be ok to take a break and I was gently guiding myself through by saying I will be ok and it is ok that I don't get anything done. But feeling motivated to get things done but not having capacity because of a flare up...lack of energy, among other things.
I rested and then realized I really should eat something, I was right. As I was getting my leftover dinner ready, I had a dizzy spell along with the other symptoms from the flare up. I worked my way through it but was starting to feel even more overwhelmed.
A few weeks ago, I told my therapist that I had decided to shelve my emotional turmoil surrounding my endo diagnosis and everything that came with it and that I would just manage things as they come up but not think so heavily of the future surgeries and suffering because the endlessness and hopelessness with there being NO cure felt like too much to hold, so I have been working on keeping that put away until I am ready to deal with it but sometimes it comes out--compartmentalizing is a skill that needs to be practiced.
I sat down to eat but realized I needed to take my meds, when I went to get them, I had another dizzy spell and realized I was shaking and feeling weak, so I sat down and focused on my breathing. Still not feeling well, I went to try to eat but was feeling nauseous. I sat and checked in with my body. I was feeling defeated--why can't I always feel like I did on Monday, among other things. I started crying which escalated into sobbing, and then even more intense sobbing. Sobbing is grief and suffering leaving my body--it is helpful and exhausting.
Do y'all know how unstoppable I would be with eternal health (that would be my chosen superpower)??
Or even just generally healthy like an average almost 30-year-old?
I am going to continue to find that balance and hold all the opposing truths/emotions as best I can while learning from everything that comes across my journey. I hope I can continue to stay motivated and not let these endo and POTs flare ups get me down (emotionally/mentally). I am going to keep practicing compartmentalizing and focus on finding a different endo specialist that is a better fit for me--don't even get me started on how overwhelming that is. I could sob just thinking about it.
I am going to focus on the tasks and goals in front of me as the way out of this long journey as well as lean on my people and skills along the way.
I feel a bit better after the sobbing and writing, so I hope my skill usage helps me stay motivated enough...
Thank you for reading, it means a lot.
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