DAILY LIVING & MOBILITY

Living With An Invisible Illness

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Kim W

The Journey To Get My Life Back

For as long as I can remember, my periods were horrendous. I was only 11 years old when I got my period for the first time. It was the worst thing to happen to me. I thought my life had ended, but boy was I wrong. My life and my story was just the beginning. 

As a child, I was always sick. I am sure my mother cringed everytime they would call her to the office saying it was the school nurse on the other line. Doctors offices and hospital visits became routine for her and me. Most times I had strep throat or a bad cold, and many times they would turn me away with just having gas. Of course being a child, I had NO idea that something more serious was going on with my body. And to be honest, for the most part, I was able to live a normal childhood. I usually pushed past any pains or sicknesses I had, and was always outside playing with the neighborhood kids. 

Then highschool approached. The pain I was begining to experience became too much. Between migraines that would leave me down for the count and stomach pains that had me crouched over screaming in agony. My mom finally took me to the gynocologist where they found I had a cyst on my ovary. They prescribed me birth control to help with the pain and keep my cyst from growing more. They would tell me these "pains" were normal woman pains, and that I would be fine. 

My periods became heavy, my acne became horrible, and it was extremely hard to keep my weight down. I decided to try and use tampons, because it became hard to do anything with needing to wear ginormous pads constantly. I passed out the first time, and when I tried again it made me dizzy and caused so much pain. Needless to say, I haven't worn a tampon since. I had finally gotten to a point where I needed to do something. My mom, again, took me to the doctors. My gynocologist was no help and told me everything I was experiencing was normal. So we decided to head to my primary care doctor. He told me my stomach symptoms sounded like IBS and wanted to do a colonoscopy. 

I was only a junior in highschool and I was heading to my first colonscopy procedure the day after New Years. (I think you can imagine I had a shitty New Year's Eve, literally). The nurse who was getting me prepped told me I was way too young to be having a colonoscopy. Jee, thanks lady. Ya think? After the procedure I remember hearing the news that nothing was wrong. Of course I was happy there was nothing serious, but frustrated they could not help me figure out what these bad stomach pains were. 

After that colonoscopy, my doctor told me it was just IBS and put me on a liquid diet with some solid foods. My meals consisted of, soup, crackers, lettuce, jello, and ice pops. I stuck to this for one whole month. I remember I dropped so much weight, my skin started to turn grey and I was just very sick. How could a doctor allow something like this happen to someone? I decided to go off his "diet" and begin eating my normal foods. 

Fast forward to college (keep in mind I am still having all of these painful symptoms), and I was watching TV with a friend of mine one night. All I can remember is dropping to the ground screaming bloody murder. My friend ran to get my parents and my dad rushed me to the emergency room. They took me right away because I was screaming, crying, and throwing up. Oh, let me just mention that I love the very FIRST question they always ask you is "are you pregnant?". NO, BUT I AM IN PAIN AND WOULD LIKE FOR YOU TO FREAKING HELP ME. Once they got me settled with pain killers, they told me they needed to do a pregnancy test anyways and a transvanginal ultra sound. I remember getting the transvanginal ultra sound done when they were checking out my cyst and all I could remember was how painful it was. I cringed at the thought but allowed them to do the tests that they needed to do. 

Once they got the results they told me I wasn't pregnant (NO REALLY?!), and that they did not see anything with the ultra sound. That I probably just passed kidney stones, so they sent me home. By that point I did have some relief so I didn't even care. This SAME process went on and on and on for years. 

Let me fast forward to me, today. I am 28 years old (about to be 29 on July 13th!). A few months ago, well I guess now it has been over a year, I started to become really sick. It was almost like I had the flu every single day of every single week. Nausea, vomitting, acid reflux, diarehia, constipation, headaches to where I couldn't even move my head, hip and pelvic pain, hot flashes, abnormal weight gain (15-20 pounds), painful bowel movements, bloat so bad that I looked 9 months pregnant, fatigue, mood swings, and just every horrible possible symptom you could think of. 

I finally decided to try the doctors again, because I hadn't been in years. My primary care doctor did some blood work which came back for the most part fine and an ultra sound which showed fluid in my uterus  and inflamed cervix (which I am told is normal?). She refurred me to the GI specialist. When I went to the GI specialist he told me he wanted to do an endoscopy. I prepped for that and the day came and went. Just to be told the scope came back fine. He then sent me for a stomach study. The day came and went. The results came back that I had "dumping syndrome", which he proceded to tell me could not be because that only occurs in people who have had stomach surgery. So he finally decided to send me for a... yep .. you guessed it.. a colonoscopy. This would be my second one in my short few years of life. I am sure you can imagine how these results came back. NORMAL. My GI doctor was stumped and decided to diagnose me with IBS and told me to go on the FOD MOP Diet along with prescribing me meds for IBS. Well, the IBS pills made me VERY sick, and the diet did not help at all. It just about made me worse also.

I was finally at my wits end. My life was coming to a stop. I had to leave my job because I couldn't handle it physically, mentally, and emotionally. I stopped being romantic with my husband, and I became very angry at the world. I hated life, and found it hard to want to do anything that I used to love doing. My weight kept going up and I was so uncomfortable in my own skin that I did not even know who I was anymore. 

I talked to my aunt who told me Endometriosis ran in our family and that she had had it. She told me everything she went through which was fitting my story perfectly. I finally decided to try my gynocologist again who turned me down and said it was just my pills and I could be depressed. She put me on pills for depression which made me sick. I went to see a therapist but she told me I was not depressed and that there was something seriously wrong with my hormones. I stopped taking the pills for depression and went and found a new gynocologist. 

When I walked into this new office I was feeling GREAT. I felt like this was going to be it. The answers to my prayers. I walked back into the room and was waiting for the doctor and was so excited when he came in. We talked for a while and I was feeling really confident. That was until he told my husband to come in and sit down. The moment my husband sat down I knew the news we were about to hear was going to make me lose it. I knew he was not going to help me. As we sat there he began to say that I was perfectly healthy. He see's nothing wrong with me and that I could just be losing "interest" in my husband. He told us that I also was "imagining these things in my head" and that I really should see my therapist again because it is not my hormones. I tried to tell him that endometriosis ran in my family and he proceeded to say that there is NO way I have it and that I would be wasting time getting the surgery for it. It took everything in me to sit there letting him talk to me and my husband that way. I surprisingly held it together, and once we left the building, I burst into tears. How could someone in the health field, who really does not even know me, sit there and tell my husband I am losing interest. 

Something had to be done, and it had to be done soon. I was falling apart. I hated being around people because all they ever said was, "well you dont look sick". My relationship with my husband was getting worse, I cried almost every day, my moods were horrible, and I hated myself more and more. I couldn't live like this anymore. It was too much. Especially when I knew something WAS wrong with me. Something was not right. A family friend reached out to me a few days after my horrific doctors visit. She told me her daughter went through the same thing and that they had found an endometriosis specialist right here in our state. I was so excited and called to speak with them. They scheduled my surgery right away. I was jumping with joy. Finally the answers to my prayers. That was until they called me a few days later to talk about pricing. They are out of network and my insurance would not cover it. So it would have been 6,000 up front to hold my surgery date and another 16,000 after surgery. I don't know about any of you but, I do not have that kind of money laying around. 

Once I cancelled my surgery, I was at my lowest. I had no idea what else I was going to do. I was in pain, physical pain. Life felt like it was ending, and I just did not want to deal with it anymore. But my sweet husband was not going to let my life end. He called insurance and searched all over for doctors who specialized in endometriosis and would be able to perform the surgery needed. We finally found myself a doctor and I got my appointment all set up. The day I went to see him, I was concerned. He was not an endometriosis specialist, but he did know about it and was a surgeon who could do some parts of the surgery. At this point I felt it was better than nothing. At least get the surgery so I could get a diagnosis. 

The day of surgery came. I was beyond scared. Not so much for the surgery but for what the doctor was NOT going to find. I had become so used to hearing your perfectly healthy, just crazy, that I did not want to hear that ever again. As doctors prepped me, I couldn't stop thinking about what my next move would be if they did not find anything. Was I going to just keep living like this? Everyday let my life dwindle away? 

Before I had anymore time to think about my life, the doctors were wheeling me back to the operating room. I don't really remember much but I do remember that moment I was in the recovery room and my doctor was in my face saying "you DO in fact HAVE endometriosis". Even though I was out of it, I can remember a little bit of me doing a happy dance. Not so much because I had an illness, but because they FINALLY found something. This meant I was not crazy and that I did know my body was trying to tell me something was wrong. 

The doctor who did the surgery told me that it looks like I have had Endometriosis for YEARS. It was on my uterus, and my bowels were stuck to my walls. He also found that my left fallopian tube was just about closed shut, meaning I could have a hard time getting pregnant and/or miscarriages. This was all a lot of information to take in. But I was NOT letting this rule my life anymore. 

Since surgery I have changed my entire life style. There is no exact cure for endometriosis right now, but I refused to use the medicines that many women with endometriosis use. Some of these meds were used for those with cancer and many of these women have experienced horrible life long side effects. Instead, I have decided to take a natural approach. I have changed my lifestyle and diet. Nutrition is a major key point in helping those with endometriosis. What we put into our body can easily feed endometriosis and help it grow. All these years, the foods I was eating, possibly could have been feeding my endometriosis to grow more and more.

It was important to me to get my life back. I wanted to fix my relationship with my husband and I wanted to do things I once loved to do before. While I was in the process of changing my life, an opportunity to become a health and wellness coach came along. It is out of my comfort zone, but I have not been more happier. It is not only helping me feel better, I get to help others who are struggling just like me, to feel better. Am I cured? No. Am I still in and out of doctors appointments? Yes. Will I need surgery again someday? Ya maybe.  But for right now I have slowly gotten my life back.  I am able to do yoga every day. I have started laughing with my husband again and doing some things I love. It is going to take time for me to live a normal life, and my life may never be "normal". 

I do know one thing. This illness chose me because it knows I am strong enough to kick its ass. It knows that I will do my best to raise awareness and help other woman who are struggling. My journey and story is far from over, it truly is JUST beginning.

EMPOWER OTHERS!

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