I began suffering the symptoms of Endometriosis about 6 months after my first period, I was 12. It began with severe cramping, and it gradually escalated to chronic pelvic and abdominal pain, migraines and back pain. The symptoms were so persistent, I was missing 3-5 days a month from school and during the "episodes" I could hardly walk to the bathroom. My mom, who also had suffered from this horrible disease, took me in to see our family practitioner. He was convinced I was just a young girl adjusting to "period pains" and sent me home with a Rx for Ibuprofen and birth control pills. At first, having never experienced "period pain," I believed him and felt I was just over-reacting and being over dramatic (12 year old girls tend to be that way after all). But as another year went by, everything continued to get worse. I was missing more and more school, my grades were suffering tremendously. I just couldn't keep up. I continued to see other doctors, but it wasn't until I was 17, after having my abdomen swell to the point many thought I was pregnant and having a large ovarian cyst rupture that sent me to the emergency room, did my doctors finally start to believe me. Little did I know, this would be the first of many hospital visits. They ordered an ultrasound and found that I had several cysts rupture and that I was still covered in them. I was sent home and told to stay in bed, the hope being that if I stayed "de-stressed" the cysts would desolve on their on and not cause more harm. I was on bed rest for much of my Junior year and my high school put me on Home-Hospital. When even bed rest wasn't helping, I was referred to another Gynecologist in Folsom, Ca. He immediately suggested surgery and was concerned about the birth control and pain medications I had been on for over 5 years of my life. My first laporoscopy was scheduled for May 2, 2003. The day before my senior prom.
During my surgery, they removed a cantaloupe sized cyst off my left ovary as well as, you guessed it, Endometriosis off my uterus. I was relieved to finally have an answer, and went through the next 2 years living life fairly symptom free. In 2005, I began to slowly see the symptoms invading my life again. I was experiencing such severe migraines that I would often black out, I was sent to a neurologist and they found nothing. I had basic blood tests ran, they showed nothing. I went about my life trying to suppress the symptoms without medical intervention for the following two years. By 2007, I was sick and in so much pain I went on medical leave for 4 months from my job. I was nauseas all the time, I wasn't sleeping from the pain. The pain was so severe I was throwing up daily. By this point I had spent 10 years on pain medications and various birth control pills. I went in to see my family practitioner again (I had moved to Utah and did not have an OB/GYN yet). He was convinced my problems were gastrointestinal even though I continued to tell him it was Endometriosis. He had me complete a colonoscopy (it showed nothing), ultrasounds (they showed nothing), MRI's (they showed nothing), CT Scans with and without contrast (they showed nothing). It wasn't until we went in for the HIDA Scan (to check my gallbladder) and the hospital demanded $4000 upfront, that I said enough was enough. I knew what this was. I went to 4 different OB/GYN's before I found one that I felt knew at least SOMETHING about Endometriosis. He scheduled me for surgery the following week, May 14, 2008. Surgery #2 showed that my "uterus, both right and left ovaries, bladder, fallopian tubes and pelvic cavity were covered in an excessive and unmistakable amounts of Endometriosis." My left ovary had also been "glued" to my left abdomen wall by an adhesion. My Endo had grown to Stage 3 & 4 and it didn't show any signs of stopping. Within 2 months I was in even worse pain then before and was frantically trying to find an answer. I was missing 3 - sometimes 4 - days a week from work. I was taking so many pain meds to control the pain that my family and roommates feared I was becoming addicted. My doctors answer when this was brought to his attention? "If she wont get a hysterectomy, all we can do is keep her comfortable. Here's another Rx for Lortab." He told me I had 6 months to get pregnant if I wanted to have my own family.
The scariest night of my life accured when I was in so much pain and had taken so many pain pills to control it that I was having a hard time breathing but was so out of it I couldn't even reach for my phone. The next morning I woke up to find that the entire bottle was empty. I had taken all of my pain pills... and somehow I was still alive? To me this was a miracle, but I promised myself that I would find the best doctor available to help me.
Dr Andrew Cook in California was at the top of my list, but he needed $25,000 upfront since I was uninsureable. We tried for weeks to find the money, but we were unable to do so. So I went back to the doctor who did my first surgery and he agreed to schedule me for another one. I underwent my 3rd surgery on Dec 12, 2008. I came home from California feeling hopeful that my doctor had gotten all the Endo out and this time would be different. I was hopeful that I had time.
On May 13, 2009 I met an amazing man and on November 7, 2009 I married him! We agreed we wanted children, but wanted to wait until we were financially stable to start our family. Unfortunately, we ran out of time and doctors believed the Endometriosis was possibly effecting my liver, kidneys and heart, as well as my circulation to the point that my ankles and feet would swell to double their size and I was, once again, in constant pain in not only my pelvic area, but also my legs. My doctors feared that the Endo was suffocating my blood vessels and the 13 years of pain medicines and birth control pills, as well as the stress, had caused damage to my other body systems. We were told our only option was to have a total hysterectomy, or continue damaging my body to the extent that children would be impossible anyways.
On August 12, 2010 I had a subtotal hysterectomy w/ bilateral salpingo oopherectomy. In lame-mans terms, they took everything but my cervix. We are now up to our neck in medical debt. Endometriosis has made me un-insurable. Because I was forced to loose my ovaries, I am going through menopause along with dealing with the emotions and heartbreak that come from the reality that there is no going back. I will never carry my own children.
In addition to dealing with Endometriosis and the effects of my hysterectomy, the symptoms that began just prior to my hysterectomy have returned with a vengeance. After over a year of trying to get answers, I've finally been able to see a Rheumatologist. She's ran several blood tests, and as of today I've officially been diagnosed with severe Fibromyalgia. My doctor is aggressively working to explain the myriad of symptoms that continue to get worse every day and the new symptoms that show up, as of right now, she's leaning towards Rheumatoid Arthritis and possibly Lupus.
