The last year has been extremely hard on my mental health and motivation. I’m going to go over the events that happened in that year, then what I experienced as a result, and finally where I am now.
Life Events in 2019
January - April 2019
For the first few months of 2019, I was off my birth control in order to qualify for the Orlissa clinical trial. I was trying Orlissa after my gynocolgist kept pushing me to try it even though my gut said not to. Being off birth control brought my pain to an all-new high. I finally got on Orlissa in April. After a week of being on it, I started to have side effects. I experienced severe nausea and was forcing myself to throw up just to feel relief. I had abdominal cramping and worst of all, I had severe suicidal thoughts. Luckily I’m usually able to evaluate myself and know when an outside source (other than my own brain) is worsening my depression so I stopped the Orlissa.
May - July 2019
I then talked to my gynecologist and we agreed for me to go back on my birth control and have my 3rd ablation. Sadly I had no idea about excision and thought my gyno was an endometriosis specialist. The surgery was in LA and I went by myself since my boyfriend and mom were traveling. Luckily my mom took a flight to LA on the day of my surgery and picked me up that evening. Unfortunately, the surgery didn’t give me any relief and I ended up in the ER 2 weeks after with a virus caused by surgery. It was a constant downhill after that. I had tons of mystery symptoms appearing and not a single doctor could tell me what was wrong. I kept looking for answers for the next few months.
By the time August came around, I had gained 30 pounds since June. I remember clearly because I had my weight documented on medical paperwork and I was shocked at how fast I gained the weight. We suspect that it was from the Orlissa finally taking effect on my body within the two months after I stopped taking it. I also developed super bad acne. Even though Orlissa was out of my system at this point, my weight gain and acne weren't going anywhere.
It wasn’t until November that my birth control finally was getting into my system and my acne got much better. By this time I was working on changing my insurance so I could have excision surgery with an endometriosis specialist in Phoenix. After insurance issues were handled, I finally had my surgery date for December 20th.
Come December 20th and I was so excited to finally have the gold standard treatment for endometriosis. I was in great hands too. But after the surgery, my doctor had told me that she didn’t find ANY endometriosis. She found a tiny piece of scar tissue but that’s it. My ablation in May must have done the job, for now at least. I felt extremely lost at this point but moved forward with pain management and pelvic floor physical therapy. I talked to my specialist about adenomyosis and she believes I could have it. So I took it into my own hands and started extensive research.
I was lucky enough to come by a girl on Instagram who had a procedure done; one I had been researching but wasn’t sure about. She gave me lots of helpful information.With her info, I knew my next steps. I needed to find an interventional radiologist; one who had experience with Uterine Artery Embolization. I found one near me and have gotten their requested referral from my endometriosis specialist. I’m now waiting for an MRI to be ordered and I will have my first consultation with him.
I’ve also been on narcotic pain medication in order to function and be productive since my pain is debilitating. This has been extremely helpful to me. The pain center I go to is very nice as well. It feels good to go to them because they take your pain seriously, they don’t judge you, and we are working on other techniques for my pain as well. I’ve been trying various nerve block injections and will try a new one in a few weeks.
What I Learned
2019 was a very stressful year. It was filled with eventful mishaps that kept kicking me down. And during that entire year, I was constantly trying to "go back to my normal life" or "go back to my old habits". By normal life, I guess I meant the life I had years ago before endo was even a thing in my life. That was years ago. I don't even remember how it was. And by old habits, I kept trying to push myself to jump back into things. For example, I started being vegan about 2 years ago and then I started only eating fruits and vegetables. I enjoyed it a lot but this came to a halt once the Orlissa clinical trial came along. It became too hard while being in so much pain. So since then, I started eating dairy, fish, eggs and even had fried chicken a few times.
So throughout 2019, even though I was already dealing with a lot, I was constantly trying to go back and be the "old" me. I was trying to go back and be vegan. Or go back and eat a raw diet. I was constantly trying to "go back" to this person I was and I was trying to do it all within a day.
What I've Changed
It wasn't until about two to three months ago that I realized that I was so wrong. Why am I trying to go back to the past? Why am I trying to become an older version of myself? And why do I expect it to happen overnight? I'm never going to be the same person I was even a year ago. I realized that I need to focus on a "new" me, not an "old" me. AND I need to take it one step at a time. I'm not just going to toss all this trauma that my body and mind have gone through and expect me to change in one day. I need to work on myself and then I can move forward.
So that's when I decided to embrace small steps. And that's the only reason why I've been making progress. Instead of trying to go back to eating a raw diet and start a gym routine all in one week, I'm taking my time. I created a meal plan for myself and I'm focusing on my calorie count and have eliminated my trigger foods. I'm still eating fish and eggs, but I have eliminated dairy. And I will be starting the gym within the week and I will start with some light walking. I'm not pushing myself to be the "old" me and I'm not expecting big changes to happen overnight. When I was trying to do that this past year, I was adding fear and anxiety to my plate and I didn't even realize it. Every time I tried to go back to "old" me, I would fail miserably. This would lead to me getting extremely demotivated and then I was terrified to try again. I was scared of failure.
I was so scared of failure that I didn't even expect myself to get through day one of my meal plan. I was certain that I was going to cheat or quit. But now I'm ending day two and I'm still going. Taking things slowly has helped me work through my fear. It is amazing and I'm so proud of myself.
So if you have a chronic illness and you're trying to live your "normal" life again, don't. Start your new life and make that your new "normal". Take it one step at a time. Reward yourself for progress. Let yourself feel PROUD when you conquer a small battle. I am positive that you can do it and I'm positive that you can embrace the new you.