It is hard to try to explain endometriosis to people because I would rather say oh I have a migraine or I have pneumonia, because those things are so common it's easier to understand. Also, if you want to try and understand then ask me. Don't base judgement or assumptions on someone with endometriosis because you think they will just get over it or take a pill. I also don't want pity or sympathy. Trying to tell people that I am having surgery and they say I am sorry, that isn't going to make it better. Us endo chicks get tired of apologies because that's not what we are looking for. We aren't looking for attention just understanding. I tell people think of endo like having the flu every single day. Yes we have our good days and our bad days. There is no magic pill or potion, and there is no cure. Another thing I have gotten is, well you had a hysterectomy so I don't understand why you are in pain because I had one and I don't have pain and I am healed, or why do you have to have another surgery if you had a hysterectomy.
Let me draw this out for you a bit. The reason for my hysterectomy is because I had suspected Adenomyosis which is endometriosis inside or surrounding the uterus. When I had my hysterectomy I had to have my cervix out as well due to cancerous cells within the cervix, so double whammy. Pathology report came back with focal Adenomyosis, which meant they did not have to dissect my uterus, it was right there when they were testing it. That was the reason I had to have a hysterectomy because periods were making my pain worse and my uterus was the issue. Just because I no longer have those two vital organs, doesn't mean I am healed. Again there is no cure.
The reason I have to have yet another surgery is because my first two surgeries were ablation, what that means was the doctor thought they knew what they were doing and they burned the endo or just probably burned what they thought was endo, so they screwed me up. If endometriosis was actually a common thing back in my early 20's and I the doctors knew about excision (cutting out the endo) then I wouldn't be where I am today.
The biggest issue right now is eating and getting sick. You would actually think that I would have lost 100 lbs from all the vomiting and everything else I face on a daily basis. It doesn't matter what I eat, something triggers me and I get sick. I basically live on zofran and Imodium right now, that's why I get irritated when someone says I have a stomach ache then feels better the next day. It's to the point now where I get freaked out leaving the house or actually going and doing something fun because I know that I can only be out for a little while before I get sick. Stress makes it worse so doing the job of two people at work isn't helping and the days I so desperately want to call out sick, I can't. I have to just slap on a smile and go about my business and pray my relief doesn't show up late, which always happens.
I know this sounds like a giant me complaining rant, but it gets very tiring listening to what people say behind my back and not having someone actually ask. I did not pick having an incurable disease out of a hat. I was born this way and I deal with it pretty well. That is why I am constantly posting articles on social media because my one article or one blog post, reaches someone that may be wondering why they are having such pain or why doctors aren't listening to them. I would not want someone to go through years of misdiagnosing and incorrect surgeries, because painful periods and pain in general is not normal. I was told from when I was 13 that it was just a bad period. Flash forward to 34. Where I don't get a period and I am still in pain. That is not normal. I am fortunate to have such a good team of doctors as well as a few select friends that do their best to understand.
I am literally a month away from my 6th surgery. I've always been pretty zen the last 5 but this one I am scared to death. When endo reaches yet another vital part of your body (intestines and colon) you don't know what the doctor will find and you don't know if you are going to have a bag for the rest of your life. So to say that I am zen is a lie. I have such anxiety and worry that it is messing with my head for sure....
So I had to set the record straight because I don't need negative vibes in my life.
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