choose not to suffer
In 2012, after living with abdominal pain for 15 years, I was finally diagnosed with Endometriosis. Before my diagnosis I went to countless doctors and emergency rooms looking for answers and relief from the pain. The only answer I ever got was "every woman gets menstrual cramps...it's normal...you're just too sensitive." Meanwhile I'm vomiting, fainting, unable to move from the pain. NOT normal.
Finally one ER nurse said "huh...looks like you might have endometriosis." I had never heard the word before but after much research found out that it's actually a common chronic pain disease. The only way to diagnosis it is with exploratory surgery, so I had that done within a few weeks. Sure enough, my new GYN found endo. At my followup appointment she looked very grim when she told me that Endometriosis is a chronic pain disease with no cure. That I would experience pain for the rest of my life. That there are treatments I can try, but the relief from them are short lived and can cause major side effects. But by that time I had already joined an online Endo support group who's members told me that my doctor would say exactly those things and that she is wrong. That there IS a cure and that cure is excision surgery by a certain skilled surgeon. So I didn't believe my doctor. I had great hope for a cure even though every single website and study on the disease says there is none.
This skilled surgeon has a popular practice five states away. All he does every day is perform this magic surgery and "cure" suffering Endo patients. My husband and I felt it was worth it to drain our savings and go get the surgery. It was a hell of a procedure that included a traumatic recovery. As I recovered I slowly realized as the pain from the surgery left that my normal endometriosis pain was still there. It didn't work. I told the online support group this and they accused me of trying to talk women out of getting the surgery that could cure them. They kicked me out, it was devastating.
This is when I let the pain take over my life. I wasn't ready to accept that pain would be part of my life forever and somehow this denial made the pain worse. I still had hopes for a cure so in the next three years I had three more surgeries and tried four different drug therapies, one of which gave me 6% loss of bone mass...not to mention a lovely bald spot. The funny thing is before each surgery my (new) surgeon would tell me that Endo has no cure and that surgery is a temporary fix. Why couldn't I believe him? And why did he keep agreeing to cut me open?
After each surgery I'd have a few weeks to a few months of no pain. In this time I'd convince myself that I finally found the answer and start doing the things I loved again. Hiking, painting, running...all the things I thought I couldn't do with the pain. Then as the pain crept back in I became more and more depressed. Each time I'd go right into invalid mode retreating to my bed with a heating pad at the first glimmer of pain. I had no life but pain. I quit my job, stopped doing my hobbies, avoided my friends. I treated managing my pain (if you can call it that) as a full time job.
Fast forward to a few months ago.....I am now missing an ovary and my uterus...I am recovering from my last surgery....I visit my surgeon for the followup appointment. I tell him that the pain is back, he tells me in so many words that he isn't interested in treating me anymore. He says "you endo patients" all keep coming in over and over again for help with a disease that can't be helped!
That was a slap in the face that I needed. Fast forward to now and I am finally accepting my fate. And with the help of a therapist (and antidepressants for now) I am determined to not be defined by pain. I WILL continue to do the things I love. I WILL exercise and take care of my body. I will choose NOT to suffer.
I'm thankful that I found this website when I did. I would have dismissed it months ago, thinking that it's for people who don't really have it that bad because your techniques wouldn't work for really bad pain. I know now that that's wrong.
Just today I started feeling the pain creep in and instead of hiding under the covers feeling sorry for myself I decided to go to the retirement home where I volunteer with dementia patients. The entire time I was there helping I felt no pain.
Now I use distraction as my new miracle cure. It really works! I immerse myself into the things I love and like magic the pain dissolves like a distant memory. Of course it comes back later, but at least I accomplished something and feel better about myself. At least I LIVED for a while. And I'll do it again tomorrow, and the next day, and the next day until the day I die.
I choose not to suffer. I choose life.
Thank you for helping me.