Ever since I can remember, I have always had a lot of pain with monthly cycles. I remember being not quite a teenager yet and writhing in pain on the bathroom floor and in the bath tub just trying to get a little relief. None of my friends ever complained about their cycles, or really any females that I knew of, so I decided I must just have a really low pain tolerance, obviously if every other female in this world could handle it, then it must be normal. Eventually, I ended up going to an OBGYN where it was found I was developing ovarian cysts, I was put on birth control pills and told that some women just have a harder time than others when it came to their cycles.
I continued on birth control pills for another 6-7 years, the pain let up a little bit, but I knew there was still something not quite right. One of my rock bottom moments in this journey came to me when I was a college student working two jobs. I was on my way to work one day when I had to pull over due to unbearable pain. I ended up calling my boss who ended up calling an ambulance for me. I was taken to the hospital where I was asked a lot of questions about my pain, how long I had been experiencing it, and if I was sexually active. After questioning, I was quickly given the diagnosis of pelvic inflammatory disease (PID) most often caused by an STD. The ER physician simply took my symptoms, my age, and the fact that I was sexually active and gave me that diagnosis. I was given three different antibiotics and instructed to take them all before I could be released. The saddest part, all cultures to check infection which would lead to PID all came back negative, I had no infection. I was still told it was PID, it was the only thing it could be. I left the hospital that evening still in pain and devastated no one, not even the ER was taking me seriously. I was frustrated because I knew something more was going on and pumping my body full of unnecessary antibiotics was not going to solve the problem. A few months went by and I sought another opinion, this time from a female gynecologist. I thought perhaps she might understand a little bit more and be able to help me. Once again, it was another disappointment. She told me I fit some of the symptoms of a condition known as endometriosis, but I was far too young to have that (I was twenty years old at this time and had been suffering now for a total of 8 years). I continued to live in pain and started developing a pretty bad case of depression and anxiety, I was tired of being in pain and no one believing me or taking me seriously.
A year later, things started looking up. I married the man of my dreams and soon after we began talking about trying for a family. With my history of reproductive issues and ovarian cysts, we weren't sure if conception would be difficult, so we thought it was best to begin trying. Several cycles went by with no positive pregnancy test, this really came as no surprise. After many failed attempts and a miscarriage, we sought the help of an OBGYN. I decided I wouldn't even bring up my chronic pelvic pain or the fact my cycles were unbearable, I would stick to just getting help to have a baby. In our infertility consult, my doctor started asking me if I ever had any pain with cycles. I was honest and told him I had quite a bit of pain, but many doctors assured me it was normal. I also told him about the diagnosis of PID I was given a few years prior. He strongly disagreed and started mentioning the strong possibility of endometriosis. This was the second time in my life now I had heard about endometriosis, or what I eventually became to know as 'endo'. My main goal was to get pregnant, so he came up with a treatment plan to try and achieve successful conception and pregnancy. Six months later and after many injections, tests, and hormones, we conceived a precious baby boy.
After the birth of our son, endo was the last thing on my mind, that is, until my cycles resumed. My cycles came back very quickly postpartum along with that familiar excruciating pain. Five months later, I developed a large blood filled ovarian cyst that needed to be surgically removed. I had a laparoscopy to remove the cyst and during surgery multiple areas of endo were found and burned off. I was diagnosed with Stage I-II endo, which was mild. The centerforendo tells us that there are four stages of endometriosis: I: minimal II: mild III: Moderate IV: Severe. Finally, finally I had my answer to all the years of pain, and finally I had hope, or at least I thought I did.. My surgeon had burned off all of the visible areas of endo, but strongly recommended I go on Lupron to prevent re-growth of more endo. He also suggested if we wanted more children, we should try to get pregnant again immediately. We had a six month old at the time, we were in no way wanting to get pregnant again or put my body into a medical menopause with Lupron. We decided to not do anything, we would just wait it out.
It turns out, God had other plans for us. We ended up conceiving a second precious baby boy just two months later. The pregnancy was full of complications, but we ended up delivering a healthy term baby boy. After the birth, once again, my cycles resumed quickly and this time with a vengeance. I was so thankful I had two amazing healthy children, yet I couldn't enjoy them, once again, depression and anxiety started to consume my life. No one understood what I was going through, even I didn't understand.. I thought my surgery to burn off all endo solved everything. I was confused and frustrated as to why I was in even more pain than I had ever been in my life, even before the surgery. I started to isolate myself from others. Most friends I had eventually stopped asking me to do things or to have play dates because my answer was always the same 'no'. The majority of the month was spent just trying to get through each day and take care of myself, let alone two small children. I was embarrassed, lonely, and in a huge amount of physical and emotional pain. Along with the near constant pelvic pain, I started developing some pretty bad GI symptoms and started losing weight as pretty much everything I was eating I was having some sort of GI reaction to. I sought the help of many doctors who all told me I had irritable bowel syndrome (IBS), a hormonal imbalance, and anxiety. It turns out, many women are given this diagnosis, as endo can create many symptoms similar to IBS ( http://www.centerforendo.com/articles/bowel.htm) Obviously, no one could help me.. so I decided to start doing tons of research to try and find someone who could. I had to get my life back, too many days were being spent wasted. I eventually found quite a few resources and an amazing support group on Facebook, Nancy's Nook. It was through that virtual support group where I really came to learn about excision surgery. I felt that seeking out an excision specialist would be my best bet. I continued to do a lot of research on excision surgery and the specialists that were available in the United States. There were many excision specialists, but all of them were so so far away or didn't accept my insurance, so I decided excision surgery wouldn't be an option at this time and I would just have to wait it out.
The summer of 2014 proved to be my most trying time yet. I really didn't things could get any worse, but I was wrong, I was very wrong. My husband was gone on another deployment and we had recently been given some pretty serious news regarding my oldest child and his health. I was taking him to doctor appointments and therapy appointments nearly every day and trying to take care of our one year old as well. It was during this time that my symptoms went from 'really bad' to 'I can't do this anymore' . Performing activities of daily living, walking, and even going to the bathroom were a huge task for me and excruciating. It got to the point where I would have anxiety attacks every time I would have to use the bathroom because I knew the pain that would come with it. I was so sick and tired of living like this and not being able to be 100% for my kids. Once again, I tried a new OBGYN in my local area. I ended up seeing him multiple times in a span of just a couple months. At first, with all my other symptoms, he felt there was more going on and sent me to an endocrinologist and neurologist to rule other things out. Little did I know, but at that time, my endo and another condition I knew nothing about, was wreaking havoc on my whole body, causing severe symptoms all throughout my system. I was told that my high stress levels were just making my endo flare really bad, it would get better when I got my stress levels under control. While I really wanted to believe that stress was just causing an increase in symptoms, I didn't fully believe it. It wasn't until an evening last fall that I knew things were getting critical. I was so weak I could barely walk around, let alone take care of my boys, I was in so much pain that I would just lay on my couch with a heating pad while I had the boys gated in a separate room. I was severely nauseous, I had no appetite, my heart constantly pounded, and I was dizzy. I couldn't even get down on the floor to play with my boys anymore, I had reached my breaking point. I wanted to be the mama to my boys that I never could be before, my husband would soon be returning and I wanted to be the wife that I never could be before, I wanted to be better for everyone, but also for myself. I was tired of suffering and tired of seeing the ones I love suffer all because I couldn't give my all.
I started researching again, there had to be someone out there that could help me, there just had to be. Looking back, all the sleepless nights spent on my floor with a heating pad and chamomile tea were a huge blessing, not only did I get tons of research done and become even more educated on endo, but I could chat with other women in my endo FB group that really understood what I was going through. Talking with them and reading their stories really gave me hope, but most of all, it made me feel validated, what I was going through and the every day suffering was real and I wasn't alone. It was at this point that endo really came to be my identity. I had let the disease take so much control over me, I was now endo. It was all I knew.
All of my research proved to be successful in finding an excision specialist semi close to me. I had finally found someone! I was elated to say the least. I ended up finding a specialist in Minneapolis, MN. I found out he took my insurance and made a consult for just a couple weeks later. The consult went well and I had so much hope! I was in awe that I would finally be receiving excision surgery, "the gold standard in treating endometriosis" ( centerforendo.com) . Surgery day finally came and my specialist spent 3 1/2 hours excising various areas of endo, including deep endo in the rectum. He also ended up cutting out endo behind both ovaries, on the uterosacral ligaments, behind the cervix, and the rectosigmoid part of the colon. Adhesions were taken down from my bowel that was partly attached to my pelvic sidewall and my ovaries were suspended to prevent any adhesions from forming. My surgeon was amazing, he has a huge amount of compassion for his patents, and he really put me at ease. He is still keeping in touch with me, checking up on me to see how I am doing one month post op. He spent nearly thirty minutes with my husband after he performed my surgery just to go over with him everything he found and cut out along with pictures to show just exactly what he did. He explained that the places where endo was found, particularly deep endo in the rectum was the reason for my 'IBS' symptoms. The disease went so deep, he had to cut down to nearly the muscle. He couldn't believe all the disease that had been missed from my previous surgery two years prior. His prognosis as far as my endo goes is quite good, he feels he has excised every bit of endo that he could see.
Recovery has not been easy, certainly harder than what I thought it would be, but I still believe there is hope. I am still in the 'wait and see' part to determine whether or not the surgery will have been a success for me as far as pain goes and better quality of life. Unfortunately, we do know that not all pelvic pain will be gone due to a newly found diagnosis of adenomyosis during the surgery process. While I can't say whether I am 'cured' or not as there really is no 'cure' for endo, I have great hope and faith that my life will be different. I was told and I am still being told that recovery from excision is a process, once surgical and internal incisions heal, then comes months of pelvic physical therapy. It really pains me that my children see the struggles I have been going through, but my hope is that they see their mama as someone who perseveres and never gives up, I especially want to set that example for my oldest. The eight scars that remain on my abdomen from my endo surgeries go far less deep than the scars inside. Endo can destroy a woman's whole life, a whole family. Not only can it rob a woman of her fertility, but for the women who do end up having children, it robs them of the precious time with those children that they longed and prayed so hard for. No, endo does not kill.. the body that is. But it does kill the spirit. We need so much more awareness of this disease, many many women go years with suffering before they are diagnosed, this can have a huge psychological impact. More info on why it takes so long for endo to be diagnosed and the psychological impacts that can develop can be found here. I went almost 10 years before I was diagnosed, but there are women who have gone much longer than that and its not okay. If I am fortunate enough to ever have another child, and if this child is a girl, I fear I will pass this disease onto her. While endo is no legacy I would ever want to leave behind, I know one thing for sure, she will not be one of those women who go years with suffering without being diagnosed and treated. I will be her biggest advocate and support, which is what all women with endo need and deserve. Not only do we need support but encouragement, education, and to get the word about endo out there even more. I think many people keep this disease behind closed doors because its a 'menstrual' disease and can come with some quite embarrassing symptoms such as pain with intercourse and pain and difficulty with bowel movements (http://www.endometriosisassn.org/endo.html). The fact is, endo isn't necessarily only a reproductive disease. Endo implants can attach and grow outside of the reproductive system: the GI system, the lungs, diaphragm, and even the brain (ihs.gov) The Center For Endometriosis Care (CEC) even tells us that endo creates an inflammatory response within the body. Implants secrete their own hormones and prostaglandins making for a constant state of inflammation. These implants respond to hormonal fluctuations throughout the menstrual cycle and as a result 'bleed', the problem is the blood has no place to exit, this makes for severe inflammation and irritation to nearby organs.
March is International Endometriosis Awareness Month. I wrote this post and shared my story to help get awareness out there. I realize it's still February, but getting the info and awareness out there just a couple weeks before the month even begins is important. Many people don't even know what endometriosis is or they think they know what it is, but really don't know what it truly is. I know there are women out there right now who are going through some of the same things I mentioned in this post. I want them to know they aren't alone and while there may be no definitive cause or cure, there is hope. I have heard way too many stories of women that knew someone who had endo and they were fine, I have even been told by other fellow endo warriors that they had it and are now just fine.. endo affects everyone differently, depending on what stage the disease is and just how deep the disease goes. I strongly encourage you to wear your yellow (the color for endo awareness and support is yellow) and show your support for the millions of women who suffer every day and will continue to live the rest of their lives with this horrible disease.
For more information regarding endometriosis and the worldwide Endo March which will be held in Washington DC on March 28, 2015, click here
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