I read many parts of your blog just now, for the first time and am so happy you are writing about all your experiences and possible cures for this horrible disease. It sounds like we have had many similar ones. I am from Hawaii, and although I have attended school in several states on the mainland, Hawaii is my permanent home.
I was 19 when I started feeling the dull throbbing in my lower abdomen, on both right and left sides. I was in college and drinking a lot of alcohol, had a horrible diet of eating nothing all day until dinner time, when I would eat a bowl of cereal, then drink a diet Dr. Pepper. Before going away to school, I had never experienced drinking soda, eating sugar, or drinking alcohol as my mom was a naturopath; we always had vegetable-based meals at home until I left when I was 16 for college. After three years of terrible eating, it caught up with me. However, I hadnt been raised to go to the doctor for anything, so I just put up with the pain until I was 25 and my mom had been diagnosed with stage 4 ovarian cancer at age 49. I was in shock, because she was so health-conscious, but her mom had died of the same thing when she was 59. I was her primary caregiver and was trained by her nurses to care for her at home, with the help of hospice. She died 9 months later.
After she died, I married my fiance in Hawaii two months later. My mom was my best friend, confidant, and the stress of her passing was a lot for me. The pain started getting worse, and finally my husband forced me to see a doctor. Thankfully, the doctor I chose diagnosed me immediately with endometriosis and scheduled a surgery to have a look and remove everything possible. Unfortunately, I woke up from the surgery still in massive pain, and my ob-gyn telling me that I had stage 4 endo, plus it was the worst case he had ever seen and that the adhesions were attached to too many vital organs, including my liver and kidneys, for him to remove much. He put me on Lupron, the hormonal shot that stops your period for 6 months. I experienced all the side effects of it, memory loss, hot flashes, and weird hair growth plus constant spotting throughout the treatment. Two months after it stopped, I got pregnant.
Being pregnant was the best I had felt in over 10 years. It was 1995, and for three months I could actually function the way I used to, with no pain, no fatigue or cramping. We had pictures of the tiny ultrasound on the fridge of our little baby boy, named Darien. Then, during my 4-month checkup, I miscarried right in the doctors office! It was horrible, horrible pain and I screamed my head off, crying because the baby had died, and I felt the familiar stabbing again in my lower abdomen immediately. The endo had returned, and with a vengence.
My husband had never left Hawaii in his life, so we moved to Colorado for a few years, since buying a house was much cheaper there, and my moms sister lived only a few miles away from us. She was the only one in my family who I was close to besides my mom, so that was good. Did I mention that when I married my husband, I became an instant mom to his 5-year old daughter? We got full custody of her and I raised her, she was my new little best friend, like my mom and I had been. Her bio mom wasnt ready to raise a child so it was easy for her to attach to me. After going to three doctors in Colorado, I found a wonderful Korean ob-gyn who worked with a nutritionist that specialized in using diet to cure endo. I had to do 24 blood tests and I was diagnosed with anemia, candida, and low in B-vitamins. They put me on a strict diet which cut out all refined foods, dairy, gluten, and sugar. They put me on Nystatin, an anti-fungal, which I took 4 times a day. The first month was horrible, with the die-off effects, but after that, I exercised and started feeling better again, to the point where I was running about 5 miles every other day, had lost about 30 pounds, and was down to only 112 lbs!! For a tall person like me, at 510, I was pure muscle and bones. I felt wonderful and we tried several times through fertility treatments, to conceive again. Nothing worked. I was 30 years old and my husband was tired of the snow. We moved to Las Vegas.
In Vegas, I went to 5 different doctors and none of them agreed with my doc in Colorado, nor would they prescribe me the Nystatin, for fear of hurting my liver, they said. I continued to stick to the strict diet, but the water in Vegas is horrible, the air is very toxic and full of dust fungus, and I started feeling sick again. We adopted a little boy, since I was unable to have a baby, who was special needs, age 7. He was quite a handful, but my husband did the discipline. All I had to do was work and cook. I was a social worker. After 10 months, my husband grew tired of the heat and dust, so we moved to San Diego.
My husbands true colors were slowly coming out after 8 years of marriage. The kids were showing signs of emotional abuse, and he was beginning to physically hurt me during his frequent bouts of anger. He was jobless, I found social worker jobs easily but he decided to stay home and take care of the kids. I went to 5 different doctors in San Diego, but my work only offered Kaiser as a medical plan, so the docs were limited. None of them would give me Nystatin, and even though I had proof it worked so well in Colorado, they all said my doc was wacked. One of them convinced me to have surgery again, after seeing an ultrasound where my right ovary was the size of a grapefruit. She looked at my family history with ovarian cancer and we decided to do a biopsy.
The biopsy had turned into her removing my whole right ovary, since she said she didnt want to rupture it in case it was cancerous. The day after the outpatient biopsy, that doc left for the Caribbean and I started feeling feverish. Since I was taking the pain medication, it gave a false negative for high fever so I didnt call an ambulance, although I felt like my insides were twisted and heating. My husband refused to drive me to the ER, which was an hour away, so my 13 year old daughter did in the middle of the night. Did I mention that my sweet husband had turned into a psycho almost overnight?!
At the Kaiser ER in San Diego, many illegal immigrants from Mexico bring their kids, since they have free government medical, only if they have a slight fever, or sore throat, or other problem that could easily be cared for by an outpatient clinic. The ER was packed when we arrived at 3 am, and I signed in, writhing in pain, but the receptionist said it would be a long wait. Never did I imagine that LONG meant 21 hours!! I was put in a little room so I could lie down, but no one would give me pain relievers, my fever spiked up to 107, and of course no one could call my doc because she was out of the country. My daughter stayed with me the whole time and I thought I was going to die. My stomach swelled up to pregnant status, and finally, after 3 shifts of ER docs, one decided to see me. They gave my morphine and finally the pain stopped, and after several tests, they admitted me, saying I had an abcess full of infectional fluid in my abdomen and it needed to be drained. I was put on antibiotics and was in the hospital for almost 3 weeks. I had ovarian remnant syndrome, a condition that is rare, but happens if you get your ovary removed and the doc doesnt get all the pieces, then the pieces start floating all over and adhering themselves to anything they land on after the fluid is drained. Did I mention that there was a gallon of nasty, yellow and red infectious fluid drained out of me, through a tube which they punctured in the back of my hip through to the front of my stomach and it had so much pressure that it squirted all over the surgeon who was putting it in? They attached it to a bag that was drained every 12 hours, totally full of the fluid. The antibiotics seemed to be working and bringing my fever down, but I cringed at the amount they were putting in my body, knowing that antibiotics make endo grow due to their effect on the hormonal balance.
After the three weeks were over, I was sent home and had a letter in the mail saying that I was dismissed from my job because it was a small agency and they needed to hire another social worker. However, I didnt really care because I knew I would probably never be able to deal with work for a while. My husband was furious, since my income was our only income, and he still refused to work. I would wake up in the night hearing screams, but couldnt get out of bed to see what the problem was. Something was not right in my own house. We filed for bankruptcy and had 6 cars reposessed in 6 months, since the car dealers didnt care what our credit was, as long as we had a down payment. My daughter did most of the caring for me, and we went to apply for help from the state. We went to the food bank for food. My sons final adoption court hearing had been changed since we moved from Vegas, and the plan was for the kids and me to move home to Hawaii as soon as the court date happened. I began selling all our furniture to get enough money for plane tickets.
My husband refused to go with us. He was making us homeless, and I was guessing from the fearful looks of my kids, along with their silence, that he was doing something terrible to them while I was asleep and on my pain medication at night. Just 5 more months, I kept telling myself, until my sons court date before we could leave the state. My husband only cared about himself and had huge demands on the kids and me. Our rental agreement would be up around the same time as the adoption. I bought the plane tickets and was ready to get out of there. My husband had already set up a place to stay for himself in California, so we would be free to go and live with his parents, who welcomed us home in Hawaii. It was 2003. Finally the adoption date happened and we were on the plane.
Back in Hawaii, I had a lot of connections for doctors and work. I went back to the same doctor who originally had diagnosed me with endo in 1994. It was 10 years later, but the doc said I was a really young 36 year old. He actually recommended that I get pregnant, but I didnt even have a boyfriend!! I was going through a divorce and the last thing I wanted was to get in another relationship!! I went to 6 different doctors after that, and they all said similar things, except one, an RE who my friend went to for endo, who tried 14 different hormonal treatments in one year on me. Each one had such awful side effects that I would rather go through having a period than that! I found immediate work as a school counselor, right around the corner from where we lived with my soon to be ex inlaws. I was right, the kids finally felt safe to talk about my husbands abuse towards them, now that we were across the ocean from him. I cant even write all the things he did to them, but lets just say he should be in prison for life.
I had some great friends from my childhood in Hawaii who were a great support for me during these times. Everyone at my work knew what I was going through and were so understanding about me taking sick days and helped me take care of my kids. My daughter was a junior in high school and my son was in fifth grade. I started therapy, was diagnosed with PTSD and depression, and so were my kids. I had friends who had a house available for very low rent, and we moved in there within a few months of moving home.
Over the next few years, I began getting more and more sickly, but we had found a great family doctor who prescribed me the Nystatin again. He also referred me to a rheumatologist for my muscle aching, and a neurologist for my sleep problems. I had a sleep study and was diagnosed with PLMD, restless leg syndrome, severe bruxism. The rheumatologist did a lot of tests also and diagnosed me with severe fibromyalgia, with rheumatoid arthritis in my hips. I hadnt drank alcohol for almost 15 years, but suddenly was put on nine medications to help me function. In 2007, I was asked to be the vice principal of the school I worked at. My doctor recommended that I go on permanent disability, because of the amount of sick days I was calling in, a demanding position like that would probably make it worse. I was on the fentanyl patch, Norco, morphine pills for severe pain days, Zoloft for PTSD, Valium, Flexeril, and Ambien for sleep, and Promethazine for nausea. I spoke with a lawyer and he agreed. I shouldnt be driving, much less working, on all the medications I needed just to get out of bed in the morning. I had two car accidents which I caused, and am sure they had something to do with my constant drowsiness.
My daughter graduated as student body president of her class, with top grades and had a full ride scholarship for 4 years at UH. My son, however, was having so many problems at school, it was really rough raising him on my own. I had dated a few teachers from work, but nothing serious. He was going through puberty, and I had a good friend who was a single pastor who helped me out with him sometimes, taking him out to play golf or surfing. My son was born with fetal alcohol syndrome which affected his inability to remember long term, but one night he had his first and only flashback. He was 13 at the time, and attacked me, throwing me on our stove after he turned it on and battering my face and back, throwing me on the floor, and I called the cops after gettting him out of the house and locking the door. I called my pastor friend from the ER and he drove all the way from his house at 3 in the morning to be with me. My son was taken to detention hall for two weeks while the courts figured out a permanent place for him. The night before court, my pastor friend offered to take him. He had two older kids who were in their late 20s and felt like my son would do well with a male role model. He became his legal guardian.
In the meantime, I got my disability after two years of waiting for a court date. I am thankful that I had some foresight and had saved money to live on during those two years. My son was doing much better in a structured environment that I couldnt provide. I had a doc appointment every month for medication refills and updates from my family doctor. My pastor friend and I began dating, and I realized how much he had done for me, especially since they were going to put my son in a group home until he was 18. At least this way I could see him without living with him. I still was nervous about being alone with my son, because he was so unpredictable. He finally graduated from high school in 2010, and started college here in Hawaii, to become a pastor. He is dorming about an hour away. In November of 2010 I married his legal guardian, which was one of the best decisions I have ever made in my life. He is a wonderful man who has become my caregiver, and although I have over 30 endometrial cysts growing in my abdomen from the ovarian remnant syndrome, and they rupture about once every 2 months, putting me in such intense pain that I either go to the ER or take the maximum amount of medication, he holds me tight and prays with me until the pain subsides.
I am going to try [removed by admin] way of fighting endo again. I know the candida is back, and have ordered the vitalzyne you recommended, Melissa. Thanks for writing this blog and helping women understand that they have other choices besides pregnancy and hormones to treat this awful disease. I will recommend your blog in my group I hate endometriosis on Facebook. Please join us, as your expertise will be welcome for the young ladies who have recently been diagnosed. Now that I am 43 years old, I know my chances for pregnancy have gone down even further, but my new husband and I are still going to try for a baby of our own. It has been my dream to have a little baby with my blood to hold for the first time after giving birth to it. I hope you have enjoyed my story and its happy ending.
Thank you Lisa for sharing your story and for you continued hope and positivity considering all that you have been through. I do hope that your dream of holding your own child comes true for you. It is never a bad thing to dream and hope….life can surprise us sometimes.Author of Cure Endometriosis & Eating with Mel.