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On December 11, 2012 I was diagnosed with Stage IV Endometriosis. Prior to my diagnosis, I had never heard of Endometriosis. I had no idea what to expect of the life that was ahead of me, and I am still figuring out what that life is. All I can do is take it one day at a time. I am not an Endo expert; I can only speak from personal experiences. I will not presume to think that my life is so interesting that people want to read about it, but I feel like it is my responsibility to share my story and spread Endometriosis awareness. If I only reach one person, then this blog is worth it. Thank you for reading.

Sunday, August 14, 2016

Elisabeth: The Endo Exception

The Endo Exception. This is a title I will not accept. I had to go to the doctor today because of severe pain in my pelvic area and lower back that was different than the pain I usually deal with in those areas. Normal ovulation pain occurs on one side of my uterus and it is a sharp pain. I generally have pain on the right side of my lower back that radiates down my right leg to the arch of my foot. This pain was different.
Yesterday, I began experiencing dull aches on both sides of my uterus and dull aches across my lower back. I was short of breath and light-headed and worried that I might pass out in my car on the way home from my trip to Target. I made it home, took a medical marijuana gummy and rested. The cannabis helped, but the pain returned when it wore off. I was unable to sleep because of the extreme back pain I was experiencing. I honestly can't remember the last time pain kept me awake. I called my doctor this morning and they were able to see me today.
I went to my appointment, had the usual vaginal ultrasound; which was extremely painful today. Everything looked fine. There was nothing out of the ordinary happening in my uterus. That should've made me feel better, right? Wrong. I always feel crazy when I go to the doctor with an issue, only to be told that everything looks good. My doctor is very kind. He said, "Don't think that this is in your head. It's like a pebble in your shoe or a piece of sand in your eye. Just because others can't see it, doesn't mean it's not causing you pain."
He recommended that I try a new hormone medication, but I am treating my disease as naturally as possible: diet, acupuncture, physical therapy and cannabis. I have used hormone therapy in the past and I have had adverse reactions to the treatments. I have taken opioids to help with pain management, but they did more harm than good.  I had surgery to remove 95% of the endometriosis that was visible in my body. However, the pain was more severe after the surgery. All of these methods made me feel worse. That made me feel crazy, too. I told my doctor today that I feel like I'm the exception to all the treatments that are supposed to help women in my condition. He agreed with me. He said that I am part of the 10-15% of women that undergo surgery and not experience relief from or improvement with their chronic pain, pain with intercourse, painful bowel movements, etc.
That's why I hesitate to try new treatments that aren't natural. I actually hesitate with one natural treatment method, as well: pregnancy. Almost everything that should help me hasn't. The last thing I want to do is bring a baby into this world with the expectation that it will make me feel better, only to have my endometriosis remain the same or get worse, and end up being unable to physically take care of my child.
I'm tired of being the exception to all of the endometriosis treatments I've tried. I will continue to attack this disease with natural methods, since they have been the most effective. I will continue to expect to one day feel better. I will continue to press on even when days like this try to bring me down. I will get better and live the life that a young woman should. No more living on my couch, saving energy for the few times I do anything social. I will one day be strong, energetic and busy making a joyful life for myself.
Thank you for reading. I needed to vent. Please contact me if you are in a similar situation or just want to talk.