(Adapted (with typos) from e-mail to six-pack)
I so so appreciated you all taking the time out of your busy lives to email me at length or have non-alcoholic drinks with me!
I guess I am a hopeful and optimistic person (or living in denial?) because I really thought there would be another treatment plan I hadnt thought of. Dr. Garza was like, you have a disease. You will have to plan your life around it. I’m one of those lucky few who will always have recurrent cysts and they will keep growing. we tried the gold standard treatment and it has improved my life considerably, just not as much as I hoped it would. in a weird way, it’s a relief to finally know for sure so I can plan a future which has been on hold for a year.
My cysts should be causing constant pain based on size so it’s good they’re not. I have to pee a lot. I’m on a pain medication regimen for breakthrough pain and I may be on pain medication the rest of my life. An IVF protocol would be helpful to pause the spread of endo, as would pregnancy.
There is the possibility of going to the ER monthly to check on ovarian torsion if the pain is level 10 so I can’t ethically take long-term clients. I asked if I could stay at home and self-medicate. no. should I invest in an ultrasound machine?
I had a doula client already scheduled and they don’t want to cancel despite my health problems so I’ll hopefully get to do a birth in June and then I don’t know where I’ll go from there. i weirdly love delivering for Amazon if i can make enough money! I want to avoid a stressful work environment (goodbye mental health, Master’s degree, 5 years of licensure internship) because it causes the endo to grow and spread. I’ve looked up accommodations for disabilities and randomly taking more time off work than other people is not an acceptable accommodation. FMLA kicks in after one year. endometriosis is not considered a disability through social security because you go through periods where you can work. I’ll think about this next month though! Maybe you have some creative ideas. Doterra essential oils?
I don’t need to have surgery until the pain is unbearable or it interferes with fertility treatment but there is at least one more surgery in my future. our dream is that we could have a child first before damaging the right ovary further with surgery, and then go in to remove the offensive right ovary.
I’ve been using my coping skills ever since I got fired last year and I thought I could get through situational depression but I am accepting the situation is not going to end. it’s time for some antidepressants! Life doesn’t have to be this difficult all the time. thinking about how awful I felt before, how did i survive? The painkillers probably helped. 🙂 I read an article in the fall about chronic disease which describes it as small, unending loss piled upon loss, which you never get to fully process or grieve because another loss comes along and is compounded. Infinite losses. We’re going to take a break and enjoy life this next month before making any big decisions.
Again, thanks for listening! I would start a blog but the world does not need another endo warrior infertility blog. [Editor’s note: I started a damn blog.] Love y’all!