Anyway, since October of 1994, the pain had become 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 every night. I went on like that for almost a year when I had my second surgery.
Voila' they found endo and adhesions everywhere. So they "got all they could", which as so many of the women with endo 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, uterosacral 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!!! I had no insurance when I left work to help out my mom who had breast cancer, so when the pain became so unbearable, I went to our state (Vocational Rehabilitation) to get assistance. They agreed to pay for surgery. 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 was back. The day of our anniversary. What a present huh?
What really confuses me is that this is a DISEASE. But if you asked people on the street...most wouldn't know what it was. Ladies that I worked with had no idea. Or they'd say, "oh yeah, everybody has a little of that, right?, or Yeah, I have bad periods too!" 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, this disease might not kill you physically as in dead, (but as a dear endo sister reminded me, there is a slight chance of this becoming endometrial cancer, which could kill you OR the adhesions and/or the endo could cause an obstruction of either the colon or possibly the ureters which could kill you or cause you to have to have a colostomy) but even if those horrible things didn't come to pass, 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 and been turned down twice now.
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 existent 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 had started a new job, which I got during my 5 weeks after surgery when I thought the surgery had worked, and I resigned after 2 1/2 months after missing a week due to the pain and they needed someone they could depend on and I couldn't take a chance on being let go. It is very hard to stay on your feet all day, or sit for that matter, smile, and when people ask "how are you today", you just grit your teeth, smile and say "fine, thank you"?
I now know that I am not the only one to have these aches and these pains, and to 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 other men's wives, might not have to suffer as we do now. It was a long time coming, but I finally managed to have surgery. I was so excited...only someone with pain from endo, waiting for relief can understand that I guess.
Since my surgery in Feb 1999, I've had a few problems that were discovered during a CONSCIOUS PAIN MAPPING in July 99 to be NERVE ENTRAPMENT problems along with some adhesions. However, NO ENDO was found. Yippee! Just know that you are not alone. Others have walked in your shoes and others will follow. We must all lean on each other for support because we are truly the only ones who really know what it is like to live with endometriosis.