The Endometriosis Diet is one important component to effectively addressing endometriosis. But it looks different for every endo warrior.
In my previous post, I mentioned that I have been dealing with a progressively worsening illness. I have Stage IV Endometriosis (endo). One in ten women have endo so it is not something unusual, it is just not a very well known disease. I should stop to give a quick disclaimer: I am not a medical professional and any info on this blog is meant as a record of my own experiences. I am sharing what is going on in my life to spread awareness and understanding, not for sympathy. I am a tough lady. :) Alrighty. So, what is Endometriosis? To sum it up, endo is the growth of endometrial cells outside of the uterus that cause irritation and pain through cysts, scarring, and adhesions. Endo can also cause infertility, chronic pain, and fatigue which can bring along depression, anxiety, and isolation. I am a visual learner so when I was researching this disease, I found the following video from the World Endometriosis Society. It shows and describes endo pretty clearly. Every woman with endo experiences it differently. Some women with Stage I endo have huge amounts of pain while some women with Stage IV don't find out they have endo until there are complications with fertility. My story with endo may have started when I was in high school. I had extremely painful periods. By my senior year, I wanted to be put on birth control to help with periods and acne. The pain lessened and I went on with my life. There were a few rough months here and there but for the most part, I just chalked it up to normal pains that every woman has to go through. A little over three years ago, I got off birth control with the hope of having a child with my husband. I got off all medications, started taking prenatal vitamins, and started researching and planning. The painful periods were back but they were manageable. After 6 months with no luck, I started tracking my cycles more closely and doing more research. A year passed, still nothing, periods getting a little worse. At the year and a half mark, I talked to my general doctor when I was in for a yearly exam. Since babies were on the brain, I didn't talk about period pain much, I just wanted to know the next step to achieve pregnancy. She sent me to see a doctor at a women's clinic and I was given some advice, told that stress might be making things harder, and that if I still had no luck after another year, I should return for tests. A year later I returned and one test was done that turned out to be inconclusive. By then, I was losing a little hope and started questioning myself. If I am not pregnant by now, does that mean I am not meant to be a mom? Is something wrong with my body? It turns out there was. Around the three year mark of infertility was about the same time that my period pain started interfering with my life. Even with the highest dose of pain meds, I was getting pale, shaky, and dizzy from the pain. The breaking point came when I could not stand up straight at work and had to lay down in the break room so I wouldn't pass out. It finally made me question if the period pain could be connected with infertility. As I always do, I researched the heck out of my symptoms and found that endometriosis fit pretty closely. I contacted the women's clinic with my idea of what could be the issue. My doctor confirmed that it seemed like the correct diagnosis but the only way we could tell for sure was to do a diagnostic laparoscopy - an outpatient surgery where they fill the abdomen with air and then make a few small incisions to peek inside with a camera. I had the surgery in January and my doctor took photos while checking things out. To keep things more light-hearted and not so graphic, I drew simple illustrations of what things look like in there. My doctor told my husband that the endo adhesions were basically trying to give my organs a 'big hug'. They have completely surrounded my uterus, my right fallopian tube and ovary, part of my left fallopian tube, and some of my bowels. I also have one chocolate cyst (filled with blood) and quite a few other cysts. With the endo being so extensive, I was recommended to a fertility specialist that is highly skilled in cases like mine. She met with my husband and me recently and told us it would be smart to have surgery as soon as they could schedule it. On May 21st, she will try to remove all the cysts and adhesions with laparoscopic robotic surgery. The healing time will be 2-3 weeks. Once I am feeling well enough, I have been instructed to try for pregnancy before the adhesions grow back. With Stage IV endo, fertility is not a promise but In Vitro or adoption are definitely options. I am ready for the surgery and I am hoping that a lot of my symptoms lessen. Though I am tough, things have been getting progressively worse. The amount days in between times of pain is getting smaller and new pains are popping up. I am also almost always exhausted. It is not easy to sleep when in pain and I have woken up with nightmares and clenched teeth. I am tired of missing workouts and I am tired of my stomach bloating from the toxins. I am leary of taking on too many events/social commitments outside of the house because I don't want to let anyone down by withdrawing or go out and act like a basket case because I am in pain. I know things will get better, though, and I have an amazing support group. I am glad that there is an explanation for my infertility and pain. I have been making art as personal therapy and a way to process all that my body and brain are going through. Even creating the illustrations and writing this out has helped a lot. My heart goes out to all my friends that have invisible illnesses like Endometriosis, Ehler's Danlos Syndrome, Chronic Fatigue or Pain, Fibromyalgia, Depression, IBS, Lupus, the list goes on. You are all so strong! Thanks so much for taking the time to read this very personal blog entry! *Read about my second surgery, here. :) *
Endometriosis has many steps to establish and spread, but it all starts with an endometriosis cell. That cell is created thanks to many triggers, including dioxins, phthalates, genetic inheritances, BPA, and even chronic inflammation. By removing these triggers, we may be able to change the way endo
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The song and dance with birth control pills went on for years. Seven years if we want to be a bit more specific. Yes, I had regular periods, but I still had unbearable pain and bleeding. Where one pill failed to eradicate the pain, another was brought in its place to try to solve the problem. Only my doctors and I weren’t attempting to solve any problems. We were simply trying to cover up my symptoms. Pills for a monthly cycle, pills for a quarterly cycle, and even birth control shots could do nothing for me. What I discovered through my mess of medication was that I was losing myself. In high school I considered myself a truly happy and positive person. No matter the situation I really tried to see the good. Something as silly as the sun being in my eyes was a terrific reminder that I had the ability to see. Sore muscles after a hard softball practice reminded me that I had passions and was able to work hard. Even the difficulty with my parents splitting up allowed me to discover how much I enjoyed writing. However, this bright outlook on life faded. I began to feel sad and often. Simple tasks became a struggle, as my body hurt physically and I was hurting mentally. Anger took over being rational and I felt like I was losing control. As a self-proclaimed “mama’s girl” I went straight to my mom for advice. I know it bothered her immensely to see me in pain and not know what to do to help. By her suggestion, I went to see a new gynecologist. He was the director of my younger sister’s choral group and had performed in a local show with her. Being a friend of the family, I was happy to see someone that I knew was not only respected in his profession, but also someone in whom I could put my trust. It didn’t take long after I shared my symptoms and experiences for him to suggest a root cause: “Maybe you have endometriosis.” Say that word again, please. What exactly is that? I learned that endometriosis was a condition that caused the lining of the uterus (the endometrium) to grow elsewhere in the body. It could be found on the ovaries, fallopian tubes, urinary tract, bowels, or even intestines. Often this tissue could cause inflammation, scar tissue, and extreme pain. When left to grow the tissue can cause organs to fuse together or adhesions to grow. Sadly, it is one of the most common of health problems for women. So what did that mean for me exactly? Not much. At least not right away. It was August 2009 and I was getting married in October. The only reliable way to diagnose endometriosis was through surgery, which I was unwilling to have until after my wedding. Endometriosis is not visible on ultrasound or other external tests. Laparoscopic surgeries were both used in the diagnosis and removal of endo. Doctors would check for the endometrial tissue and laser off what could be seen. What was a few more months of pain after I had been suffering for so long? Wait I did, until December 21, 2009. Surgery It was a fairly benign procedure. There were no special preparations I had to make the night before, other than to not eat or drink after midnight. My dad was all scheduled to pick me up bright and early the next morning, about 5:00 am, to take me over to the hospital. Of course, I would have loved for my husband to take me, but being so close to the end of the year he was out of sick days. As a newly married couple with not much money and lots of new bills, we decided it was best that he would just go to work that day. So I woke up early, kissed him goodbye, and told him that I would see him once he got home. Being the caring and concerned person she always is, my younger sister had joined my dad for the ride. We arrived at the hospital and waited for the fun to begin. I checked in to the hospital at about 5:45 am and was taken back in to surgery around 7:30 am. This laparoscopic surgery required that I be put under general anesthesia, so I remember none of the surgery, just waking up in post-op. Other than feeling tired and sore, I felt relatively okay. The anesthesia had made me nauseous, so I sat around for a little while eating crackers and sipping on ginger ale while waiting to use the bathroom. Did you know that you are not allowed to leave the hospital until after you have gone to the bathroom? Luckily, I had no problem going at all. The problem was seeing the massive amount of blood in the toilet after I had finished. Between not eating for hours, feeling nauseated and weak from the anesthesia, and then seeing the blood, I almost fainted. Good thing my nurse had insisted she stay with me in the bathroom! After that embarrassing little episode I was allowed to head home. I was able to check out my new scars and take a beautiful nap. Two tiny incisions now graced my seldom-seen stomach. One incision was right above my pubic bone, less than an inch in length. The other incision was directly across my belly button. Now I have always had a strange belly button. It wasn’t quite an in-y and it wasn’t quite an out-y. I knew that once this new incision healed I would be left with something entirely different. It wasn’t something that was going to cause me to lose sleep. I took my medication for the pain and slept for a few glorious hours. The next two weeks were my Christmas break. I had planned the surgery for the perfect time. Not that it had slowed me down much at all. My surgery was four days before Christmas, so there was plenty to be done at home. I baked cookies, I wrapped a few last minute gifts, and I cleaned the house from top to bottom. Even I was surprised by my own ability to move around so easily. Although my abdomen was swollen from the air that had filled it during the surgery, I really only felt as though I had done a hard abdominal workout. Sitting down bothered me for a few days, but nothing too severe. And of course there was bleeding. I bled for two weeks straight, one of which should have been my period anyway. Again, it wasn’t severe, more like the first few days of my normal period – slightly heavy. I couldn’t complain. A sore stomach and bleeding for two weeks and I would be free from endometriosis? I will take it! Only I wasn’t free from endometriosis. Not even close. Stay tuned for my plan following my surgery and how I came to learn about the Creighton Model and NaProTechnology.
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