By: Fela M'tima




When you’re diagnosed with Stage 4 Endometriosis like I am, you know from the beginning that your endo grows outside of the reproductive system. What you don’t realize then is not only can grow farther than you knew possible, but it can cause side effects that no one can really prepare for.


January 2016, my symptoms were at an all time high. I had only had one laparoscopic surgery the previous fall and though I was waiting for excision, it really could not come sooner. I started noticing problems with my right arm but never thought endo could be the culprit.
One day I got a sharp pain in my upper arm when I reached to grab a glass in the cupboard and naturally, thought nothing of it. Then maybe once a week I’d notice the pain while I was tossing and turning during sleep. Of course I thought this was caused by how I was sleeping or maybe even that I was in bed so much. Another month passed and I started complaining about it, because it was happening more often each week. My dad even made the joke of, “You have to be careful holding that remote, Fela.”
(I mean all I was doing at the time was watching TV so that made more sense then anything else at the time.)

Eventually, it went away and I forgot about it. Around this time, as I said, my ovarian and pelvic pain was so bad I was in and out of the ER what seemed like constantly. I even got stuck outside an appointment in the parking lot in the fetal position chewing oxy begging a cab driver to drive me to the ER. That winter was definitely the darkest I’ve experienced when it came to pain. I was bleeding very randomly and each time was bed ridden.

One day my arm hurt when I was spotting and for some reason thought, “Hm, what if I have endo on my diaphragm and it’s causing pain in my arm?” Almost as if my sickened body sent a signal to my brain, “Yo, you gotta tell this girl what’s up.” I mentioned it to my mom, but we both weren’t completely convinced because of how *serious* that sounded so we sort of let it go. When I saw my next doctor for excision surgery, I didn’t even mention it. It was still only happening once in a while and hadn’t interrupted my sleep or day to day life…yet.

I had the surgery and my ovarian and pelvic pain got a lot better. I felt a relief that I had never experienced, which was great. I finally knew what it felt like to not have my ovaries starting a war instead me each day and my ER visits became a *bit* less frequent. When we went over
what happened during that surgery, my doctor told us that she removed a small legion on the right side of my diaphragm. I told her about the pain in my arm and though she had never even heard of that as a symptom of endometriosis, I could tell on her face that she was a bit worried.

After I was completely “healed” from surgery, I noticed my arm and shoulder pain not only became a daily thing, it became a crippling thing. I couldn’t sleep through the night or even get comfortable for that matter. I’m right handed, which didn’t help this situation either. It would hurt to scrub down counters, reach for literally anything,
and even sometimes tying my damn shoe. I would wake up in so much pain I’d have to pick up my right arm with my left to pull it off my body. I couldn’t even hug people without my arm hurting. The pain became this evil spirit *literally* on my shoulder at all times.  I became so depressed. It was so scary to feel endometriosis in a completely different area then I was used to. If it could damage my arm this much, what else what this disease really capable of? And, more importantly, why isn’t anyone talking about this?

I started physical therapy. I remember the first appointment I laid there crying as she told me how damaged my muscles had from all this time in so much pain and while explaining the damage to my nerves and amount of work I would have to do. My right diaphragm was swollen, nerves were shot all the way down to my fingers, and my spirits were beyond broken. I didn’t know where to begin. I found myself so angry. Angry at how rare these symptoms are and that I got them. I mean it was bad enough I got this disease, why did it have to take away my mobility of my arm?

I don’t think we ever get the answers we want when we are sick. No one can explain why we get sick in the first place. You have to live with unanswered questions and it is really hard. Endometriosis can be more severe than most doctors know, than most obgyns know. I don’t know when it will be taken seriously. All of the women out there with *crazy* symptoms that doctors are dismissing, are not crazy and neither are those symptoms. I am confident in our ability to understand our disease and that is very powerful.

We need to push these doctors into understanding our diseases, because the longer these symptoms go without treatment, the longer we will have to fight to get back to where we were before. Endometriosis has taken so much and I know it doesn’t have sympathy for me, or for any of us. Trust your instincts. Reach out to women. Find a woman who has a similar path as you, surgically or with symptoms. Don’t give up on what you know, because you know more then you think you do. Most importantly, no matter how much the disease takes from you, come back swinging (even if it’s with only one arm).