Saturday, March 28, 2015

Surgery!!

It's been a long time coming, but I finally have a surgery date! On April 30th I will be undergoing a laporoscopic excision surgery to remove endometriosis from the outside of my uterus, ovaries and bladder and possibly from many other sites as well. During my last surgery endometriosis was confirmed to be found on my uterus, ovaries and bladder but this past year my symptoms have increased which causes us to believe that the endometriosis has spread to my bowels, colon, sciatic nerve and a variety of other small spaces. As sucky as it is to undergo surgery and have to deal with recovery; I am extremely excited for the possibility of my health improving. I know that because I have multiple chronic illnesses this surgery will not solve all of my problems. But I also know that there is a huge chance that my quality of life will improve greatly. I've made it a goal this year to talk more and spread awareness about my illness because people need to be informed; but the one thing I don't often talk about relating to my illness is how much affects me emotionally. It's hard to talk about being beaten down emotionally, espeically when it's something that is completely out of your control that is beating you down. Especially when it's your very own body that is spiraling you into depression, anxiety and self-loathing. March is endometriosis awareness month and I know that March is ending but I'd like to repost something that I posted on my instagram earlier this month. I posted an ecard that at first made me laugh a little then caused me to really think about how unfairly women with endometriosis and many other illnesses are treated. The ecard said: "I'm so happy I got this debilitating illness so I can stay in bed for the rest of my life instead of participating in society and making a difference," said no sick person ever.

First of all, I just had to laugh. But if you have a chronic illness, you know how true this is.

It is so frustrating to me when people assume that I have chosen the life I am living at this moment. People assume that I choose to work part-time, that I choose to live under my parent's roof, that I choose to "sleep in" all the time, that I choose not to be active and that I choose to live the life of someone who is chronically ill. But let me tell you; my heart breaks when I begin to think about all the things that I'm not able to do anymore. My heart breaks a little every time I realize that I won't be able to pursue a career until after multiple surgeries and pain therapy, when I wish I had a nice place of my own and felt independent, when I wake up in the morning feeling like I barely slept because I spent the night tossing and turning in pain and consumed with insomnia and anxiety of what my life consists of, when I make the effort to exercise and I end up curled in a ball on the bathroom floor passing bloodclots and writhing in pain. The chronically ill do not choose to live the life of someone who is chronically ill. We have no choice but to give life all we've got and take care of ourselves the best way we know how. So instead of saying to someone who deals with illness, "you're so lucky you get to stay home all day." Think about how it would really be to be ABLE to do the things that you take for granted each and every day. Maybe then, you will begin to see how it feels to be chronically ill.

So over the next month, I will be awaiting surgery and researching and ALSO, on a completely different note; I will be becoming an aunt! Which is so exciting. So this month is filled with positives for me. I know recovering isn't fun but there's always rain before a rainbow and I am SO ready for that rainbow.

Thursday, March 12, 2015

endo is a bitch

If you've ever read my blog before, you know that I've been dealing with some unexplained pain over the past few months. This pain has changed and evolved to the point where my doctors now think that this pain could be caused by endometriosis. 


The pain I was originally experiencing, I had no idea could be connected to endometriosis. But after a colonoscopy and endoscopy that came back with nothing to tell me other than I have Irritiable Bowel Syndrone; my internal specialist suggested that endometriosis may be causing my pain and the symptoms I was having. I never thought that endometriosis would cause digestive issues, acid reflux, strange bathroom habits (lets not go into too much detail there), etc. To me, Endometriosis pain had always been that agonizing, falling to the floor in fetal position, extremely intense mentrual-like pain. But I have since been informed that if endometriosis is to grow on the outside of the bowels, intestines, bladder, pelvic wall, etc. it isn't necessarily going to present in the same way. If it's on your bowels, it will affect your bowels, and cause pain that will make you assume it's a gastrointestinal issue. So, that's where we're at with this current pain.


It is now thought that my endometriosis is coming back, kicking and screaming and demanding to be seen. Which means, surgery is in order. Next Wednesday I have an appointment to book a laporoscopy to clean up the endometriosis on my uterus, ovaries and fallopian tubes. During this process, the bowels, intestines, bladder, etc. will also be inspected but not yet removed. Which is unforntunate because that means, there will most likely be a second surgery. That's another frustrating thing about endometriosis. Endometriosis is considered to be a gynaecological disease; therefore, a gynaecologist is usually the one to perform the surgery. But if the disease has grown onto organs that are not reproductive, it needs to be removed by a general surgeon or an endometriosis specialist (which are very hard to come by!). 


Originally, I wasn't convinced that my pain was caused by endometriosis but over the last few weeks, I am now sure that endometroisis is causing this pain. *GRAPHIC DETAILS AHEAD* Because of the medication I am on to control Endometriosis (Visanne) I no longer get a monthly period; which means no cramps and no bleeding (awesome!!!). This medication has worked well for the past year. About three weeks ago I was laying in bed and out of nowhere, I was in excrutiating pain. It was like someone had flipped on a switch and it automatically turned on the endometriosis. This pain lasted about half an hour and then began to slowly die down, and I went upstairs to take some pain killers. I hadn't felt pain like this in over a year. I knew, it was endometriosis pain, it's a pain like no other. I went to bathroom and was shocked -- first, there was blood when I wiped which also hasn't happen in over a year. Next, *here's the graphic part* sorry * there was a blood clot in the toilet. Bright red, terrifying for someone who isn't supposed to have a period. I was too exhausted to worry about it at the time, so I went back to bed.


From that day on, every three to four days I experience the same agony. Sudden and intense. With no warning at all. In between these episodes, I am greeted with tugging and pulling sensations, a rippling pain deep inside my lower abdomen. And a constant fatigue that makes me want to sleep all day. I like to avoid taking painkillers as much as possible, but over the past week, I've taken them probably every single day. Prescription pain meds, that barely put a dent in the pain.


I considered going to the hospital; but going to the hospital and saying that you have endometriosis never turns out well. You're pumped full of drugs, poked and prodded at, stuck with needles and end up in even more pain. There are many things that could have causes this sudden outburst of pain; like a ruptured cyst, a torn lesion, tugging between two lesions or scar tissue building up, it could be anything. So for the next week, I'm going to hold on until I can book this surgery and hopefully get a little relief.