This year marks 10 years that I have been dealing with these illnesses. As I look back over the last 10 years, I realize there is so much knowledge that I have now that I wish I was told back at the start. I’ve gained this knowledge from tons, and I mean TONS, of research, reading everyone’s blogs, and talking with others of the #endowarrior community. Yet despite my constant frustration with the lack of cures and medical research, I realize that I could have saved myself a lot of pain and frustration if I knew then what I know now. As a result, I want to write down that knowledge, in case there is someone out there hearing the terms endometriosis or adenomyosis for the first time. And I guess that in some ways this will become a therapeutic letter to my past self.
Things No One Will Tell You At First
1. You do not have to try any form of birth control just because it is “highly recommended”
One thing I wish I knew all of those years ago was that birth control did not help me in any form (depo-provera or daily pills). In fact, in some ways, birth control made my life worse. Even when it helped with one or two endo symptoms, it added a whole new list of issues such as: weight gain, severe acne, huge mood swings, depression, fatigue, and anxiety. I felt terrible every time I tried a new pill or new steroid. However, I kept trying pill after pill or even injections because several different medical professionals highly recommended it and continued to encourage it. Eventually, I learned that I could say no. I could stand my ground. I realized that living without birth control was better for me than with it. I wish I came to that realization sooner.
2. Most pills, steroids, injections, surgeries, and procedures had a shelf life
Now this idea is completely subjective, as nothing lasted for me. But some people do find success with their treatments. It all depends on the individual patient. But for me, everything worked for up to three months then stopped. Birth control worked for a month then I would experience break through bleeding. Depo-provera worked for 3 months then stopped helping. For 3 months my OBG had me on birth control AND depo at the same time, and even that stopped working! (Which thank goodness I stopped that, that was very unsafe). My first laparoscopies did absolutely nothing for me, except to create excess scar tissue. My ablation and appendectomy helped but after 6 months those two stopped helping as well. The new thing now that everyone wants me to try is an IUD but I’m done trying these things. Why would I put myself through that when nothing else has helped or so many #endowarriors have said it doesn’t work?! (Again, this is completely subjective).
3. It’s Okay to Do Nothing
As previously noted, sometimes I have felt pressured by others to try new procedures and medication to help the pain. But the best I have been is when I’ve done absolutely nothing. Now sure, this means that when I do get my period I am at wits-end, curled up into a ball, unable to move for days, but it also means that for about half of the month I am okay. When I’m not ovulating or on my period, I have days where I can be symptom free. I can exercise and eat healthy, not because it will help my endo and adeno (because it won’t) but it does helps me feel good about myself.
4. “It’s okay to not be okay”
One last thing that I really want to stress is that it’s okay to not be okay all of the time. It’s okay to be frustrated, it’s okay to be upset with the universe. Anyone in this position would be aggravated at times. But as long as you do not give up, your chronic illness cannot win. It’s not the sadness or the chronic illness that defines you. It’s getting up everyday and battling the disease one day at a time that makes you a true warrior.
What advice do you wish you could give either your past self or those newly diagnosed?