My Battle with Endometriosis

Let me first introduce myself. My name is Denetra Bell. I was diagnosed with an auto immune disease, Stage IV Endometriosis in 2013, but have endured pain for years. Along with Endo, I have IBS (Irritable Bowel Syndrome), Chronic Fatigue Syndrome, and suspected Adenomyosis (only can be confirmed through a hysterectomy). I am currently in the process of a diagnosis for hypothyroidism as well. Whew....now that I've gotten that out of the way... I've always had moderate-severe pain with my menstrual cycle, but since that is how it has always been for me, I thought that it was normal. Until my senior year in college, that is. I was on the dance team and had practice earlier in the day. I felt nauseous, faint, and really bad cramps but managed to make it through and came back to my dorm to study for finals. It was then that I knew that this was not normal. These pains were not just cramps. I could not even walk. I literally had to crawl my way to use the restroom. I went to my primary care doctor who immediately suspected endometriosis as the culprit to all of this pain that I was experiencing. So off I went to find an OB/GYN to fix this. The first one I went to rushed through my questions and quickly prescribed pain pills (which didn't work). The second OB/GYN told me that I needed surgery but didn't recommend having it immediately unless I was ready to conceive. The endometriosis would return and I would be sitting right back in his office for another surgery. So I waited and waited (years) until I could no longer bare the pain. I went to a new PCP and she ran some tests and I had a UTI and some other infection that made her worry enough to send me to Kingwood Medical Center STAT for further tests. Turns out I had an obstruction in my ureter and had surgery to put a stent in place. It got to the point of having a few "good" days out of the month before the cycle would start again. After a trip to the emergency room, my (somewhat overprotective) dad walked the halls to talk to a doctor to refer me to "the best" OB/GYN in HKA area. This lead me to the third doctor who told me that the only way this could be treated was with a complete hysterectomy. I am 28, with no children, so this left me hysterical! Anything that was said after that was a blur. I sat in my car and cried that day! My dad talked with the  doctor afterwards and he referred me to a Urogynocologist (because of my background with kidney problems).  I had a CT scan done and there was again no sign of a kidney stones and no reason why there was still a blockage in my kidney. My Urogynocologist referred me to a Reproductive Endocrinologist, Dr. Mangal. Finally, I'm getting closer to some answers! After having 2 uretal stents, lupron injections, CT Scans, MRI's, ultrasounds, countless blood tests (with horrible veins), Electrogastrography (EEG), Intravenous Pyelogram (IVP), & emergency room visits...I finally got my diagnosis after having a laparascopic procedure. During the surgery, Dr. Mangal was not able to complete any excision due to the severity and risk for infection. Four months later, I was back in the OR undergoing a laparotomy. He found my entire right side fused together including: urinary bladder, right ovary, rectum, right ureter, right Fallopian tube and posterior wall of the uterus. He described it as "frozen pelvis". I had cysts that had grown hair and teeth, ruptured cysts, and a retracted (tilted) uterus. I also had a superficial adhesion on my left ovary, but thankfully he was able to remove it and for the most part my left side was untouched. He was not able to completely remove the adhesions fused to my uterus without damaging it. I was strongly encouraged to freeze my eggs or have babies NOW. This is my story. It has been a little over a year since the surgery and I am still enduring Endo.