life is a silly thing. you never know what is going to happen, or how things are going to change. i never expected my life to be where it is now. i never expected to have the people around me that i do now. i never could have guessed how things were going to turn out. i never expected that the pain i started experiencing at 17 would never go away. i never expected to go two years without a diagnosis. and, once i received a final answer–i never expected to be told a year later that i had early onset MS.
no one expects to ever have to deal with disease…it is hard to try to explain to your friends that you would rather sit at home instead of going to a bar on Saturday night because you have no energy or are in severe pain because they can’t see it. Endometriosis is invisible to everyone. You can’t see that there is something wrong. You may be able to see that I look tired or
sick, but after a while people start to think that it’s an act. I wish it was.
The pain is not constant, but it is chronic. Almost every day I cringe from the pain. No one understands what it is like expect for those who also suffer from this. It is miserable and uncomfortable. You want to explain to people why you keep holding your side or complaining about pain, but to do so would mean talking about female anatomy which is not always the most comfortable thing t
o try to explain. The first response I usually get when I explain to people what I have is “Oh, so you have cramps?” … I WISH! The next statement bothers me the most and the non-chalantness that people say it with bothers me even more: “Well, we never thought you would have kids anyways.”
First, endometriosis does not mean that I cannot have kids… no one said that. Second, how can someone just assume that if I couldn’t that it wouldn’t be a “big deal” simply because THEY didn’t think i would… what about what I want? I want to have children. Yes, I may not be fond of other people’s babies/toddlers but that’s because they are not mine! No one LOVES the idea of dirty diapers and spit-up, but I strongly believe that those issues all go away when it is your own child. I can have children, thankfully, but the fact that people respond in this way is insensitive and well, extremely irritating.
To have endometriosis is not as bad as other diseases, this is absolutely true. Yet, it is a struggle and deserves to be discussed more often. This disease can be debilitating. This disease affects young and old. This disease SUCKS!
I spent two years trying to convince everyone that I was not making up the pain, but with every test that came back without answers, they began to discuss whether I was “trying to get attention” or depressed. I tried to convince them that the pain was real–it was. No one really believed me until I landed in the hospital for the second time after passing out from the pain. Sometimes I wish that there was some outward sign that I could show people and be like “LOOK! I really do have something wrong–I’m not faking it,” but I think showing people a picture of scar tissue built up behind my ovaries would be slightly awkward.. although, it may be worth a shot.
When I underwent a six-month treatment with Lupron Depot, my whole life changed. I thought it would help me… I had so much hope. Yet, I gained 30 lbs in the course of 6 months, experienced hot-flashes, insomnia, and extreme depression. I was, in essence, a 45-year-old woman going through menopause when I was 19 years old. I was more miserable than I had ever been in my life. I hated myself. I guessed why I had to go through this… I had lived my life relatively well up to that point and I did not deserve to have to go through this torture.
Almost four years later, and the pain still comes almost every day. I deal with it daily and have learned to stop complaining about it (to a certain point). My family and friends are not as sympathetic with it as they were in the beginning, because most feel that I should be “used to it” by now. Well, I am to a point, but can anyone ever actually be used to pain?
I hope that by starting to talk about my experiences with this that someone else out there may know that this is miserable and completely sucks, but it is manageable. You need support and I know that anyone who has endometriosis that I have talked to have been nothing but supportive and helpful, so I hope I can provide that for you, as well.
<3
