Endometriosis: My Life Changing Experience With This Disease

Note: I know you've been reading a lot about my journey with endometriosis. March is endometriosis awareness month. I'm doing my part to spread awareness through the only method I know how, blogging. You may have read some of this in previous posts, but this is the full story.

As many of you know, I live with a condition called endometriosis, where the lining of the uterus (that woman shed every month, commonly known as a "period") grows on the outside of the uterus, instead of staying on the inside, where it's supposed to be. In growing like wild ivy all over the inside of my tummy, it causes massive amounts of pain, sharp, stabbing and throbby pain that I live with on a daily basis. Currently, I am taking pain medication to manage the pain and to try to have some semblance of a normal life as a mother and wife.

But I did want to share a little bit about my journey with this awful beast. It all started when I was a teenager, I was experiencing terrible periods each month, cramps that could give the worst charlie horse a run for their money, terrible headaches, and so much nausea that you would think I was dealing with morning sickness. It was awful to go to school during that "time of the month." I would constantly get chastised by the school nurse for being in her office all the time because of the pain, but I truly couldn't help it. I wanted nothing more than to be back in class with everyone else, not being looked at differently by everyone because I was in pain all the time.



This went on for quite awhile, from age thirteen up until I was seventeen years old. I finally began doing my research into what in the world could be causing me this much pain. One of the things that came up over the course of my researching was something called endometriosis. It certainly aligned with a lot of the symptoms that I was experiencing, and in addition to that, it was also listed as a condition that commonly co-exists with those living with Fibromyalgia syndrome, another chronic pain condition that I live with. I was certain that I knew what I had. They say that only you know your body best, right?

Try convincing a doctor of that, though. That was certainly the toughest part. The gynecologist that I was seeing was one I had been with for years, he had done surgeries on me in the past to remove cysts (fun!) but I felt like I could not convince him that endometriosis was what I was living with. It took quite a few appointments and pouring my heart out to him that I wasn't "living" my life, but merely "existing," because of the pain, to convince him to have one of his fellows do the surgery.



The day of the surgery finally arrived, and all I remember was getting there, being put under and waking up to the doctor looking at me and telling me that I indeed did have endometriosis. Of course, he didn't even stay around to let me ask any questions, like what stage it was, or anything like that. I cried with relief at finally having a name for my pain, but I also cried at the prospect of living with this pain for the rest of my life. How was I going to do this?

That was when I was hospitalized for the first time in the behavioral health unit. I fell into a severe depression several months after my diagnosis, and began to feel like my life wasn't worth it if this is what I was going to have to live with everyday. At the time, I could not even get any pain medication because the doctors thought I would become an addict, simply because of my age. Birth control wasn't an option (it still isn't,) because of the Fibromyalgia (it flares it up to the point I'm in bed because I can't move,) so that means my treatment options are extremely limited.

After I recovered from my stay in behavioral health, I began seeing a different gynecologist to seek a second opinion, that, and the one I was seeing wouldn't take my insurance anymore. Mistake number one. He ended up being more pompous than the other one I was seeing. He flat out told me to find a guy and get pregnant. Really? Do you often tell seventeen year olds who are still in high school to find a random guy and get pregnant, doc? Is that standard practice for you? Needless to say, I told him that certainly wasn't an option at the time. So, I bit the bullet and tried another form of birth control, the patch. (which I now hear is recalled, yay!) Turns out, yup, still fucks my body over because of the Fibromyalgia. I had missed more school than ever at that point. It felt like I couldn't catch a break.



In the years following, the doctors did a few more operations, mostly to clean out what was there (I finally found out I have between stage two and stage three endometriosis via one of these operations.) Finally I ended up seeing a new doctor who had just started accepting my insurance. He referred me to a fertility clinic to talk to them about my options. I thought it was odd at the time, but hey, I was willing to give anything a shot. They had given me two options as well, try Lupron or get pregnant.

Now, the man I was with at the time (my fiancee, now husband!) and I weren't actively thinking about having children yet. I was apprehensive about the Lupron at that point in time, so I gave that the thumbs down, as I did to having kids. I ultimately walked out of their office with no options. It took a lot of heartfelt discussions between me and my fiancee that led us to the decision to try for a child. I certainly didn't think I would be able to get pregnant, well, because I had endometriosis, and one ovary left (the right one disintegrated, yes, I said disintegrated, long story short, I had a cyst, doc went in for surgery, I hemorraged, he cauterized it, but in cutting of the blood supply over the years the thing just disappeared. My doctors were flabbergasted at that, too.) But, I digress. I certainly hadn't thought I would get pregnant, so I didn't think trying would hurt anything.

Turns out, after trying ONCE, I missed my period (which I never had, I was always on a 28 day regular schedule,) and sure enough that pregnancy test showed a tiny little 'yes' in the digital readout screen. We were excited, and scared, and a whole host of other emotions. We ended up seeing the OB/GYN I had seen in the past (insurance, yay!) and during the first appointment our hopes had been deflated, he thought because the bloodwork came back with such low numbers that it was ectopic. If you want to see two grown adults burst into tears in a doctors office, you should have been there. We cried the entire way home. It was just my luck, I thought. The doctor would repeat the same test in a week. We did our share our hoping and thinking good thoughts, and crying some more. As it turns out, I was just in the very early stages of pregnancy, and that's why the numbers were so low. But that week was a scary one, to say the least.



The pregnancy wasn't without it's problems, I experienced an awful lot of Braxton-Hicks contractions, so much so that my OB put me on Procardia and bedrest because I would end up in the hospital every other day. Finally, one hot sweltering August day, we were on our way to the hospital for what I thought was another false alarm. That was, until the doctor examined me. He looked at me and said "We're having a baby today!" I was scared out of my wits. Labor pain was the worst thing I ever experienced, I even got yelled at by a nurse for vomiting on the floor, even though I had know way of knowing it was going to happen. Fun times, fun times.

But finally, at 6:19PM on August 19th, 2010, my son, Syrus Voltaire made his grand entrance into the world. Of course, after labor and delivery I was so exhausted, that all I wanted to do was sleep. When our families came back later on to see him, I nodded off, and was later chastised by a nurse because they were trying to teach me how to bathe him. Things were kind of blurry after that, our cord blood courier came and picked up our son's cord blood to be delivered to the facility in Arizona, my husband went home to shower and get a change of clothes, and before I knew it, we were headed home.

Things went great for the next four months. Aside from a bout with post-partum depression (that's another blog post entirely,) I felt good. It wasn't until December that something strange began happening. One night, as I was hanging out with my sister and playing with my son, I got up to go use the bathroom, and all of a sudden, I passed out, cold. When I woke up, all I could remember was the searing pain across the bottom of my abdomen, and then darkness. This kept occurring for the next couple of months into the New Year. After numerous emergency room visits and even a visit to a neurologist to make sure there were no underlying neurological problems at play, I was referred to have an ANSAR autunomic test to figure out exactly why I passed out. I purposely did not take any pain medication that day to see how it would affect the test results. As it turns out, because I am in pain, it gets so severe, that I pass out. They found I do have a pre-disposition to it when I am in pain. Lucky me. So we chalk another fun symptom up to Endo!

In 2011, I met the most amazing doctor I have ever come across. He was the sweetest man, and he truly wanted to help me, but his hands were tied because he worked out of a New York hospital, but his office was in New Jersey, so I could still see him, but he just couldn't do any procedures on me. We ultimately decided to try Lupron. What fun that was. It ultimately made things worse for my Fibromyalgia, and put me in much worse pain. Soon, that kickass doctor moved his office to New York, so I couldn't see him at all. Needless to say, I was heartbroken.

I was VERY sad about losing that doctor.


At this point, it's a touch and go situation. Even thought Endometriosis is only supposed to act up when you are on your period, or a week before that, I believe that I have years worth of scar tissue in their, messing me up, because I wake up, in pain, every single day. I take the pain medication to essentially muddle through my day. There isn't much else I can do at this point, except visit my gynecologist, but waiting for that appointment is hard. But, I keep on keeping on, because I refuse to let this illness kick my ass, but rather I am going to kick it's ass. Eventually. Hopefully after this next operation. Because passing out due to pain? Turns out it isn't so fun.



Phew. That was certainly a long story. If you've made it all the way here, thank you for reading, from the bottom of my heart, thank you. Endometriosis is something that needs way more awareness than it is currently getting. 

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