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Hi, my name is Carey and the handsome guy in the picture with me is my wonderful husband John. He has been a godsend of support and help to me and I don't know what I would do without him. My story is like so many of the other women here but here goes........ I have had endo for over 18 years now. I've evidently had endo since I was 14 but at that time was told I just had "bad periods". I was one of those "unlucky" girls to have had worse cramps than some of the others did. I was not diagnosed until I was 26 years old and by then I had experienced infertility, cramps that put me in bed for at least 2 days every month and had reaked havoc on my first marriage. My ex-husband couldn't understand why it hurt so bad to have sex, that I just couldn't get past the pain. And when I would have sex just to "save my relationship", I would just cry all the way through it. And on top of all that, he didn't seem to notice or care that I was in pain. To make a long story short of that time in my life, he decided to find his pleasures elsewhere. Needless to say, we are no longer together. Anyway, in October of 1994, the pain became constant, everyday, unrelenting. It cost me my job as a nurses assistant because I couldn't bear to be on my feet all day, all I wanted to do was curl up and die. My boss the doc, told me to take the time I needed to find out what was wrong, to get this fixed..... but after all these tests, no one could find anything wrong, and my job was gone too. Yet, I hurt so bad, all day long, all night long, everyday, and everynight. I went on like that for almost a year when I had my second surgery. Viola' they found endo and adhesions everywhere. So they "got all they could", which as so many of the women know, just isn't good enough. The pain was back full force soon after surgery. Almost one year later exactly, I had some more tests run and they found a very large cyst on my RIGHT side. Now I neglected to tell you all the pain had been on my left side. I know that pain can be referred to other areas but I had NO pain on my right side except some recent tenderness over the ovary area. Well, the cyst was too large to be removed via laparoscopy so the doc (specialist, !!!!) did a laparotomy. The night before surgery, the cyst burst and what they found during surgery was a lot of free floating fluid and my entire left side consisting of ovary, tube, colon, round ligament, pelvic wall, were all tangled together like glue. And the adhesions and endo were everywhere, on my bladder, cul-de-sac, left and right side. So they "got all they could" again, tested to see if my tubes were open and left side is blocked! So within two weeks of that surgery, pain was back. I was devastated. I had this HUGE scar now and nothing to show for it. More adhesions, though!!! Not long after this surgery my mom ended up with very aggressive breast cancer and since I am an Emergency Medical Technician (so is my hubby), I elected to stop work to assist her in her chemo/hospital/radiation trips and give shots, draw blood, etc..... I had no insurance when I left work so when the pain became so unbearable, I went to our state (Vocational Rehabiliation) to get assistance. They agreed to pay for surgery and all but I couldn't get into the hospital I wanted, which was Atlanta, Ga, Endometriosis Care Center. Atlanta didn't accept that form of payment!!! I ended up going for my fourth surgery at Shands Hospital in Gainesville, Florida on Dec 11, 1997 and five weeks to the day of that surgery, guess what??? The pain is back. The day of our anniversary. What a present huh? What really confuses me is that this is a DISEASE. But if you asked the people on the street.....most wouldn't know what it was. Ladies that I worked with had no idea. Or they say, "oh yeah, everybody has a little of that, right?" This is a disease, just like cancer is a disease, but it isn't taken very seriously by lay people or even doctors for that matter. People might say this isn't as bad as cancer because it doesn't KILL you, but I beg to differ. No, it doesn't kill you physically as in dead, but it does kill the woman you were, or could be, it kills your mind, it eats at the inside of your body and damages silently while on the outside you look FINE. People say "but you don't look sick". So I guess that means I must not be. They say "you don't act sick". So I guess that means I must either stay in bed all the time, which isn't feasible, nor will they allow you to stay employed if you were too, or I must complain and moan and groan and cry those tears that I try so desperately to hold inside. I have earned myself a terrible work reputation (following my terrible school absentee record) for being "sickly", and therefore, that means to employers that I am not dependable. This disease kills your hopes, your dreams, your dreams of being a mother in some cases (mine in particular), your dreams of a normal life with your spouse, it kills your spontaneity, but most of all it kills your future. Your career is affected (I have attempted to obtain SSI/Disability but they want you disabled for 12 months straight before you are considered disabled), not to mention that I went to school to become an EMT and want very much to continue in that field of work, but how do you do that when sometimes you can't get out of bed??? My chances for a family are shot to hell, my life and my husband's life revolve around this damn disease. But yet, it really isn't a disease, right? WRONG. It causes more than dis - ease. This pain can be and is debilitating and excruciating. At least with cancer you are not told this is something in your head, or that it doesn't exist because they can't diagnose it properly. I have heard it said before that if this were a disease that affected men the way it does women (the career, the non-existant sex life, being able to have a family) that it would be taken much more seriously than it is. Much more research would be being done to find a cure. If it is considered incurable, doesn't that make it a disease? I will be 33 this year and I have more surgery to look forward to and more pain. I just started a new job, which I got during my 5 weeks after surgery when I thought the surgery had worked, and now it looks bleak because of the pain returning. How do you stay on your feet all day, smile, and when people ask "how are you today", you just grit your teeth, smile and say "fine, thank you". I am very grateful for the alt.support. endometriosis newsgroup that I have found because it does help to know that I am not alone in my suffering. I am not the only one to have these aches and these pains, and have suffered at the hands of some very incapable doctors, in search of that unreachable cure. Hopefully by the words of the women speaking out, a cure can be found, and maybe it will come while we still have a chance at a "normal" life, but if not, at least our fellow females, daughters, sisters, and others wives, might not have to suffer as we do now. In Friendship, Carey (of John and Carey) Florida ~~~~Perception is Reality~~~~ :-) http://www.oocities.org/HotSprings/Spa/8449 http://www.oocities.org/HotSprings/Spa/8509
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