- CASE FILE
Chronic pain stemming from Endometriosis for over 24 years. Multiple problems but no final diagnosis
ABOUT THIS CASE FILE
At the age of 13 years old, I started having abdominal issues. My menstrual cycles were very heavy and the only way to deal with the pain was to curl up in a ball and sleep. When I was 18 years old I had my first laparoscopy and was diagnosed with Endometriosis. They got rid of what they could, but I still continued to have pain. From 18 years to age 29, I had 4 surgeries to try to deal with the Endometriosis. Finally, at age 29, I couldn’t stand it anymore so they did a partial hysterectomy, but left my ovaries. For several years I didn’t have any issues except the occasional cramping and ovarian cysts. However, things started to get bad again around the age of 32 years old. The pain and bloating was unbearable. I would be nauseous and vomit bc the pain was so bad. The cysts came more often, and I started developing back pain. It was debilitating. I was trying to get through nursing school, and my husband was often deployed with the Air Force. I started seeing a specialist and was put into a medically induced menopause for several months. Finally I had my 5th laprascopic procedure and the doctor said it was one of the worst cases she’d seen! My bladder and intestines were stuck together, I had issues with my ureters, my ovaries were attached to the back wall of my abdomen, and the Endometriosis had embedded itself into my peritoneal line. It was everywhere! The surgery went well and I felt good for about 6 months but then the pain started to come back. 8 months after this surgery I had them go back in and take my Fallopian tubes. Again, I felt better for several months it then I started developing even more symptoms. I have chronic upper and lower right quadrant pain. All over back pain, nerve pain in my back, and generalized head-to-toe pain. When I would get into one of my “flare ups” I would start having the abdominal swelling and debilitating pain. My liver keeps coming back up as enlarged, and there are nodules on it. The pain radiates down into my legs and is there constantly. I’m the last year, things have gotten even worse. I’m starting to get “lightning bolt” pain that will shoot from my neck all the way down into my feet. Over the past 3 months I feel like I have the flu; bone deep pain, extreme fatigue, and chills. Any overstimulation will cause my nerves to go crazy and I will have head-to-toe tingling sometimes. The pain never goes away, it just becomes dull with pain meds sometimes. Finally my labs have started coming back abnormal. I’ve had chronic leukocytosis for over 6 months, and my inflammatory tests are elevated (ESR and CRP). No one knows what is going on or why my labs are elevated. I often have insomnia bc the pain is so bad, I can’t sit still. They have ruled out Lymes disease. I’m an RN, wife, mother, and avid ultra runner. My body feels extremely weak, and every flareup leaves me feeling even worse. I’m desperate to find out what is going on, and why things keep getting worse instead of better.