Allison's Story of Reversing Primary Ovarian Insufficiency
After batting an autoimmune condition for 17 years, Allison was diagnosed with Primary Ovarian Insufficiency. Read her fascinating story of how she reclaimed her health.
When I was 25 years old, I underwent surgery to repair my ACL (a ligament that helps stabilize the knee joint) from a basketball injury I got at age 16. Three months later, I noticed significant swelling in my hands and wrists. After a couple of months, it was becoming difficult to stand up from a sitting position and my joints were starting to ache. Then the pain started to move throughout my entire body. Inflammation was visible in every joint and completing the simplest tasks became almost impossible. My doctor referred me to a rheumatologist, who diagnosed me with rheumatoid arthritis, a chronic disease that causes inflammation in the joints and results in painful deformity and immobility. He gave me a pamphlet and prescriptions for Vioxx, Prednisone, and Methotrexate to control the inflammation and pain.
I always opted for holistic approaches to managing health issues, but in this case, I was in so much pain that I immediately went to the pharmacy to fill all three prescriptions. The pharmacist told me that I had to complete monthly labs to make sure my liver was functioning normally. Despite knowing that these drugs had major side effects, I took them anyway because I just couldn’t manage the pain any longer. I was too desperate for relief and emotionally couldn’t cope with the thought that my pain would get worse.
Within a couple of months the side effects of the drugs started in. I experienced hair and weight loss, decreased appetite, cystic acne, migraines, acid reflux, heart and chest pains, and extreme shortness of breath, and continued to have excruciating pain throughout my entire body. I also started to get depressed from the chronic pain. My symptoms were getting worse and the medications weren’t helping. My doctor said that I should consider quitting my job and applying for disability. I decided to change doctors and get another opinion. My new doctor prescribed Enbrel, Methotrexate, and Prednisone, and also gave me an endless supply of pain medications. Terrified of becoming addicted, I never took any pain medication, but I took the other drugs desperate to find relief.
Eventually, I stopped taking all of the medications. The defining moment was when I was diagnosed with shingles. It was the worst pain I have ever experienced in my life. The shingles covered one-quarter of my back and one of my breasts. The pain went through my back and breast, causing many sleepless nights. The only bright spot from enduring this excruciating pain is that it triggered an intense desire to determine the exact cause of my illness. I was 26-years old, nearly disabled, suffering in pain every day. This wasn’t me. I wasn’t going to let whatever disease I had takeover my life.
By now, it was obvious that none of the medications were doing anything to improve my symptoms. They were only causing serious side effects and other health issues that were chipping away at what little quality of life I had left. I threw all of my medications in a box and started searching for answers.
On my journey to get to the bottom of my disease, I read many books, requested at least 25 different opinions from rheumatologists, and scoured the Internet for holistic remedies.
Finally, after three and a half years of debilitating chronic pain, I was enrolled in a case management program and referred to a team of rheumatologists at UCSF. The doctors examined my entire body, ran blood tests and removed a small piece of tendon sheath from my wrist to study it for possible causes of the inflammation. The results were inconclusive. All of my tests were negative, but all of my joints were filled with fluid. I frequently endured the pain of having large needles inserted into my knees and shoulders to draw out vials of fluid. I found that a few hours of intense pain were worth the week of relief I would have after the fluid was removed. At one point, a physician from a leading health system said “Allison, we don’t know what’s wrong with you. You are a medical mystery.”
After another two years, my condition had deteriorated to a point that I was barely able to brush my own hair or get dressed. My fingers were curling into my palms and I had very little use of my hands. The pain in my hips and shoulders was unbearable. I cried myself to sleep many nights. I knew that I was fast approaching the need to get a walker, and maybe even very close to the end of my life. I was 31 years old. This couldn’t be happening to me.
Each time I needed to have the fluid in my knee drained, I opted to go to a new orthopedic surgeon in the hope that they could shed some light on my condition. One day, as I was searching for a new surgeons in my area, I picked a name from the list on the basis that I liked the sound of his surname.
When I arrived for my appointment, the doctor asked me for my diagnosis. I told him that the doctors don't know what’s wrong with me. He asked what diagnoses they suspected. The list was long and included rheumatoid arthritis, seronegative rheumatoid arthritis, and connective tissue disease. He asked if he could review my chart, which was in my car. I told him it would take me an hour to walk the two blocks to my car and started crying. I begged him to just give me the injection. He said he wouldn't put me through that pain, especially since the fluid would return in just a couple days. I was devastated because I knew that I would need a walker very soon and was desperate for a few more days of being able to walk. I took a deep breath and with tears in my eyes, told him I would get the chart.
It took me 45 minutes to walk the two blocks to my car and back. Within two minutes of reviewing my chart, the doctor looked up and said, "I think you're having a foreign body reaction to the polymer plastic screws in your knee from the surgery, and I think if we remove them, you'll get better. Let's start with an MRI to determine if the screws are still there. If they are, we will know that you're reacting to them, because they should have been dissolved within a year.”
I was absolutely shocked. I felt like I was going to faint because I could not believe what I was hearing. I had no idea there were plastic screws in my knee. I thought they were titanium. I sat there in shock and, for the first time in many years, I had hope. The MRI showed that one screw was completely intact and the other had started to break down in my body, but approximately 80 percent was still remaining. A couple of weeks later, I was scheduled for surgery to remove the screws. Those weeks of waiting for the surgery were so emotional for me and the waiting was unbearable, but I felt I was being thrown a lifeline and held on to it with everything I had.
Immediately following the surgery something miraculous happened. My condition stopped deteriorating. Within six months, the joint swelling had decreased significantly, and I was beginning to experience more freedom of movement in my body. I could open my hands again and the severe pain was easing. I could get dressed on my own, brush my hair, get out of the car with ease and walk up and down the stairs without assistance. My Antinuclear Antibody Test (ANA) - a test to detect an immune response in the body - went from positive to negative. It was the only positive blood test I had had for the past three and a half years. A couple of years later, I took a backpacking trip to Alaska, and finally felt I was on the road to recovery.
About four years after the screws were removed, I started experiencing other health issues including H. pylori, Pernicious Anemia, Celiac Disease, Costochondritis, Sesamoiditis, frequent bladder infections, and benign tumors. For three years, I frequently missed periods. In response to the irregular periods, my ob/gyn prescribed birth control. I declined and requested additional testing. She completed a very painful procedure to test for uterine cancer, and then I had an ultrasound which revealed cysts. This led to another even more painful procedure, with only local anesthesia, called a cystectomy to remove the cysts that they suspected were contributing to my irregular periods. This procedure was so painful that I was shaking uncontrollably and needed an injection to ease the pain. Afterward, the doctor told me I should have never had the procedure scheduled as an outpatient.
None of the many tests and procedures I endured ever provided a definitive diagnosis of what was happening to me. One day, I went for a urine test for yet another bladder infection, and was informed that I was pregnant. Turns out I wasn’t pregnant, but I was diagnosed with Primary Ovarian Insufficiency. Yet another condition to add to my already long list of things that were wrong with me.
After visiting an endocrinologist, I didn't get any answers as to why I had experienced premature menopause, other than a vague explanation that it occurs more frequently in individuals with autoimmune diseases and those that have been treated with chemotherapy. I met both of these criteria. The doctor advised me that there weren't any available treatments to reverse menopause, and she recommended I immediately begin hormone replacement therapy as now I was at greater risk for cardiovascular disease and osteoporosis. Once again I was being prescribed more drugs that would cause other problems for me. I was done with drugs and ready to try other alternatives.
Not long after the diagnosis of Primary Ovarian Insufficiency, a friend referred me to a holistic practitioner. My new homeopathic physician recommended a program that included changes to my diet, intermittent fasting, and extensive education on nutrition. After so many years of being failed by the medical system, I felt I had nothing to lose so signed on and started my holistic journey. My program was closely supervised and is not a program people should try on their own. Each day I logged in to my practioner’s website and reported various health measures.
The first step was to eliminate sugar, alcohol, gluten, most vegetables, fruits, and caffeine from my diet. The elimination diet lasted for about three months. He also recommended two books that helped motivated me to make these changes - “Grain Brain” by Dr. Perlmutter and “Nutrition and Physical Degeneration” by Weston Price. After the elimination diet, I continued to eliminate gluten, significantly reduced sugar, including those occurring in fruits, increased my intake of protein and healthy fats, and reduced caffeine, including tea.
The first few weeks were grueling as my body got used to my new diet. I experienced depression, dry mouth, irritability, severe cravings and was extremely lethargic. I was very determined, however, and after I went through all of the withdrawals, I noticed changes in my well-being. I started to feel an increase in energy, fewer sugar cravings, clearer skin, better mood and found to my surprise, that I was able to handle stressful situations in my work much more effectively.
Soon after, another miracle also occurred. About three months into the program, I started getting my period every month again, which was something the doctors told me was not possible. A year after I began the regimen my hormone levels were re-checked. The doctor and I were shocked to see that all of the test results had drastically improved! The most amazing result was my estrogen and FSH levels. My estrogen had increased 146 points and my FSH decreased 44 points! My cholesterol was lower, HDL was higher, and LDL and triglycerides were lower. I no longer had Pernicious Anemia and my hormone levels were back to normal. My skin had cleared up, I had more energy, improved concentration, and mental clarity, and I consistently felt calmer, more alert and less agitated.
I can’t begin to describe how ecstatic I was with my new found health. It was like being reborn and given a second chance at living a full, healthy life. The most important thing that I learned from this experience is that we need to cure our ailments, rather than treat them. This holistic program is about changing your lifestyle. It's about educating yourself and understanding how drastically food affects our health. It took an exorbitant amount of will power to complete the program, but once I started seeing the progress, it motivated me to continue on my journey.
Now when my friends or family get sick, I encourage them to ask themselves "why is this happening” and “what is the root cause.” I found that taking medications only masked the problem. It didn’t cure it. I wanted a cure, and I found it with a holistic nutritional program. I am forever grateful to my practitioner because not only did he help to cure me, but he also gave me the power of knowledge.
Seventeen years after my medical journey started, I now enjoy hiking, camping, and backpacking, even venturing out alone in the backcountry, something I was too afraid of before. I finished my advanced degree and my career is taking off. Life is good. In fact, life is better than good. It is amazing!
*Allison’s name was changed to protect her privacy. The views, information, and opinions expressed in this blog are those of the author and do not necessarily reflect those of Lisa Health. Lisa Health is not responsible for and does not verify for accuracy any of the information in this blog. This blog does not constitute medical or other professional advice and services. Always consult with a doctor on any symptoms or medical condition you may have.