ok, this has nothing to do with surgery or anything else...but I just have to post it anyway

we are a video game family. in the house right now we have a Nintendo64, PlayStation, PlayStation 2, 2 Xboxes, 2 GameCubes, a Nintendo DS...and my newly replaced GameBoy SP. see, I bought one when they first came out (the SP that is) and loved it, played it all the time. then I made the mistake of letting my 9 year old son borrow it, and he promptly stepped on the screen I was so not happy! there's no way to fix that and no way I was gonna send it in and pay for the repair on it, so I've been without for a a while. hey, don't laugh! when you can't get out of bed for a week at a time, and then can only hobble, handheld games can be a lifesaver

well, today Meatball had to run to the laundromat to wash some blankets that won't fit into our washing machine. when he came back he presented me with a brand new SP, with Final Fantasy Tactics included which I've been dying to play, and 2 packs of my favorite cigarettes (American Spirits) how can you not love a man who does laundry and buys you new toys?

so it seems I have the same problem with this journal that I have with all other journals. it always starts with enthusiasm and a promise to keep up and then gets bogged down by life and the desire to just keep to myself. happens every time, and not just with journals (or blogs or whatever). I've dropped off the face of the earth as far as most of my online activities are concerned (and considering I practically live on the computer, that's really saying something) and real-life interactions are, well, nonexistent outside family. I've noticed this a lot in my life and think about it often but this time I think I've finally realized that it really doesn't matter as much as I've always thought it did. I do feel bad about one email list in particular but other than that it's just part of who I am. I don't know if you'd call it a mood swing, really, and it's gone on for as long as I can remember so I doubt it's a hormonal thing. I think it's more along the lines of the extrovert and the introvert warring with each other. whatever 'phase' I'm in depends on which 'side' happens to be winning at the time. or something like that. whatever, I'm not making apologies this time like I usually would. I know you're thinking, "Why should you feel the need to apologize?" well, that's a whole other story. suffice it to say, I've been dealing with me and now I'm back

so, when we last left off...hmmm...*reads previous entries*...oh, yes - the US and freaking out about my uterus. again. or, still. and my beloved finally coming home . well, to pick up just after that, dr. A called me in to "discuss" my results, or so I thought, and ended up spending maybe five minutes with me then sending me on my way with a referral to see an RE (Reproductive Endocrinologist). he said nothing about the results and gave me little time to ask questions. ok, so maybe I was wrong about him being a good dr for me. figures. the soonest the new dr, dr. T, could get me in was June 23 (nearly two months later) I wanted to just chuck it all. the only good thing I could see at the time was that he did at least agree to keep prescribing the hydroc until the next appt. I know that's a bit dramatic, chucking it all over a referral that in the end was a good thing, but I'm just so sick of dealing with drs. I hate feeling like a dammed tennis ball and I'm sick of getting no answers, or worse, feeling like my complaints are going unheard. I don't think I've ever really trusted one dr I've ever had. not once did I feel like he or she actually listened to me. this just felt like one more pushing me off on someone else so he wouldn't have to deal with it. except that an RE really was a good idea. I had thought about one when I first started trying to find a dr but needed a referral to even get into one...and felt more than a little odd about seeing a fertility specialist, which they almost always are. who wants to walk into an office full of women hoping to get pregnant knowing you want to end the chance of it ever happening to you? still, REs are a great choice for endo sufferers so I kept telling myself it might turn out ok.

Meatball did come to that appt with me and was unimpressed by dr. A. he couldn't see why I'd felt good seeing him in the first place and at that point I had to agree. he was very sweet and tried to keep my spirits up as best he could before having to return to CT for another week. it was so wonderful to have him there, tho, if only to give me confirmation of my feeling of being brushed off. letting him go for that last week was almost easy knowing he'd be home for good soon...and knowing that when he did come home he'd be gainfully employed almost immediately. this gig in CT was a contract and we'd already pretty much decided that would be what he would continue to do, take contracts when he needed to and be home the rest of the time. him being away from home sucks but the flip side is him being home the greater portion of the time, not having to do the 9-5 thing that causes so many problems for him and never really allows for much time as a family. you all know how it goes, you have evenings and weekends but it never seems like enough. add to that his struggle with what we believe is some form of Repetitive Stress Disorder stemming from long hours spent on a computer and it's a mess. he's constantly in a great deal of pain and still has to take on the bulk of the household chores that I simply can't do anymore. the only time he feels any real relief is when he can have relatively long stretches of not working, allowing his body to rest and heal. contract work is perfect for that. well, this one was longer than we wanted (3 months was what we were really looking for) but it was necessary at the time and it would give us a nice "nest egg" to begin getting the house together and have something to live on until the next came up. to our surprise, the company he was working for offered him what is essentially an extended contract worth more than we'd ever expected to get and on terms he can deal with. he'll be working from home for 4 weeks then going to CT for a week for the next year or so. they already know about my needing surgery and understand that he will need extended time 'off' where he won't even be able to get much, if anything, done from home. it's almost ideal. the only problem is that it required him to pick up the work-from-home bit almost as soon as he came home, without the time he wanted and needed to recuperate from this last contract. working from home is wonderful but it's still working, it's still sitting there at his desk here in his home office, it's still doing the same job with the same long hours that leaves him feeling so horrible. at least now there is some more flexibility, he can get up to do things and can make the office as comfortable as he needs. since we finally got cell phones he can even sometimes leave the desk entirely knowing he can be contacted by phone whenever they need him. for now that's enough, after this weekend thing will change since a major part of what he's been working on will be done and his official title and job description will change. we'll have to see how that works out but for now it's a helluva lot more preferable to a contract out of state, away from his home and his family.

one major bonus to the whole thing was that the money we had saved to live on was now ours to spend however we wanted to since he'd be soon bringing in regular checks anyway. soo...we went a little nuts we are now the very proud owners of an awesome 1998 Chrysler Sebring JXI convertible, we have almost furnished the entire house (including a memory foam bed with oak frame!!!), I can now call him whenever I need to thanks to finally dragging his butt in to RadioShack and getting cell phones, and we all have new (much needed) wardrobes. I still find myself looking around the house in disbelief, it's amazing how much it's changed!! I feel sorta like Cinderella or something, from rags to riches in a few short weeks. and, let me tell you, there's nothing like driving a convertible through the incredible appalachain mountains to take your mind off health problems...even for just a little while I really don't want to sound like I'm bragging here, it really does feel pretty unreal and he worked his butt off to get us these things. he deserves them a helluva lot more than I think I do...but I won't complain we're still like kids in a candy store every time we go to the garage to just stare at the new car. I can't tell you how many times one of us has looked at the other and said, "I can't believe we own this car!!" all of it almost makes up for the months apart. almost.

back to the wait for the next appt...it was excruciating at times. I kept getting worried that dr. A would refuse to refill the prescription (he never did) or that the new dr would turn out to be clueless or a jerk or both. I continued doing research for a little while but even that just started to seem pointless. I withdrew from everything but Meatball and the kids and the house, staying safe within my own little world. I guess that's my major defense mechanism, pulling away from everything but the necessities. but, eventually, the day finally came. I had all of my questions ready to go and psyched myself up for anything he might throw at me. as it turned out, I over prepared. dr. T sat and talked with us for about an hour, taking a more complete history than dr. A ever did, answering our questions as best he could without being able to give definite answers, and generally impressed Meatball and I both. he's not an endo specialist but he's certainly better than a lot of drs out there and since my major complaints right now have little to to with endo pain and issues I was ok with the few things he's not quite up on. he does not believe endo can be completely excised, but he does do excision as opposed to laser vaporation. during the history he asked very pointed question about pain severity and location and took very careful notes so that he would know where to look once he's inside. he knows there may be bowel involvement and will have a bowel surgeon on hand for surgery, tho he wants to do a colonoscopy which will not show endo unless it's invaded the bowel wall. he didn't once mention drug therapy, tho given my other issues I didn't really expect him to. he confirmed my adeno suspicions as best he could without an MRI which was fine with me since the last thing I want is to wait around for another test (however prudent that might seem). he did an abdominal US and a transvaginal US right there in his office so he could see for himself what was going on without relying on the contradicting US and CT reports. surprisingly, he did not give me any crap about smoking (yes, I'm trying to quit...). all in all I left the office very content with his answers and ideas...except that he doesn't think he'll be able to save the ovaries. both he and original US report noted that there is very little 'normal' ovarian tissue left and the more I learn about hormones and what happens when they decline I have no choice but to admit that a lot of the issues I've been having and attributing to endo may very well be that my poor ovaries have been almost destroyed by the cysts (which he believes to be endometriomas). he assured me he will do his best to keep them but made sure I understand that he may have no choice.

one other thing that he mentioned that I'm not sure what to think of - the cyst on the left side is pretty freaking looking. it's 'septated' and just looks evil. he said that the only other time he's seem one like it was in a woman who had some sort of lymphoma. he did say what it was but my brain only registered 'lymphoma' and for the life of me I can't remember now...and, frankly, I don't want to call and find out. that along with the relatively high CA level and the size of the cysts means I will be having an ab incision. he did ask what dr. A had intended to do, since he's an oncologist, and seemed both reassured and confused when I told him dr. A had never mentioned anything. I don't know what to think but I know there's not a whole lot more he can do without actually going in and looking. my surgery date is set for the 7th and I don't want to push that back any for tests that may or may not tell us anything. the best way to know for sure what's going on is to get in there and look...until then I'll just keep telling myself it'll all be ok. I mean...dr. A is an oncologist, right? he'd know if there was reason to be concerned, right? he wouldn't have just brushed me off if he thought there was a chance of cancer, would he? I try not to think about it...and try not to feel stupid for not thinking about it. there's just too much else going on, I can't add cancer to it all. I'll go insane with worry!!

so, I am officially a now!! I couldn't be happier about it. finally, finally, the end of the pain is in sight. of course, the chance of keeping my ovaries being so slim the beginning of a whole new host of problems is also in sight some part of me tells me taking them is the way to go...it's like there's a little voice inside that pops up whenever I think about it (which is almost constantly) that just says, "It's about time!" like there's some part of me that knew this was going to be the outcome and it just sat there patiently waiting for the rest of me to realize it. I'm so scared of surgical menopause, tho!! that drastic loss of vital hormones, the havoc it can wreak on your body, the drastic changes that may never be reversed...I'm only 32 for god's sake! I'm not exactly complacent about it, but, well...I guess I've accepted it. if they have to go they have to go. I trust this guy enough to let him make the decision once he's in there. I'll just have to educate myself as best I can and deal with if/when I have to. the decision isn't really in my hands at this point, the best I can do is prepare myself.

there is one other wonderful benefit of all this - my mother is coming! she'll be here on the 4th and will be staying until the 16th. I haven't seen her since I moved from CO 2 years ago and I'm sooo happy she can make it! I know she would have moved mountains to be here, tho we haven't always had the best relationship (and that's putting it mildly) but during the 2 years or so that I lived with her before moving out of state we became close. I finally achieved the kind of relationship I've always wanted with my mother, and we worked hard for it. I miss her all the time now and I wish she could have been here for all of this. I'm so unbelievably happy that she's able to make it out and stay for as long as she is, I can't imagine having this surgery without my mommy there with me

and now I'm realizing this whole thing may not have made much sense cuz I'm falling asleep at the keyboard. oh well, it's an update at least catch you all later!

:sigh: well, nothing new. not surprising since I still haven't gotten the actual report (US done only yesterday). once again, I am amazed and heartened by the attitude of the medical profession here. I wish I'd been here all along now, I wouldn't have been so put off by the thought of medical treatment if I'd been treated so well in the past. still, I have to be grateful to be here now! even if there are no "recognized specialists" close at hand attitude makes up for a lot. everyone has been so caring and supportive, I really do feel very lucky!

the US was actually much worse than the CT scan, if you can believe that! mostly this was because of the NPO after midnight order. I've been taking one hydroc first thing in the morning but didn't yesterday cuz I didn't want to take the chance of screwing up the US. I prolly could have just taken it with a small sip of water but, well, I didn't. that meant laying flat on my back, in pain, for the abdominal exam which took about an hour. oh holy crap...I was in tears and shaking at the end I hurt soooo bad! the exam itself was just annoying, the holding the breath and the pushing of the transducer into the abdomen, but laying there was a nightmare. never would have guessed that!

when I was released to get something to eat and drink up to fill my bladder for the pelvic I went and sat in the cafeteria, trying like hell to hide in the little corner I found so that I could just sit there and cry in peace until the hydroc and ibu could kick in. I took both knowing it would take that much to ease the pain and I was soo right. by the time I went back for the pelvic I felt almost human again but still very tender. the nurse took one look at me and asked if I wanted to reschedule. I could see genuine concern and understanding in her eyes, in my already fragile state it almost brought the tears on again. I told her I was grateful for the suggestion but I've put all of this off too long to want to wait. she was very gentle and this exam didn't require her to push on me so it was completely tolerable. I actually started to relax as I got into the exam; the room was comfortable and warm and I've always loved the tables you get to lay on the movement of the transducer over the "tender spots" was actually soothing and her calm and reassuring answers to my many questions did a great deal for my state of mind.

have I mentioned how much I the nurses here??

like I said, nothing new to report yet. she did confirm that there are definitely two distinct masses, one to the right (the most painful) and one sort of to the left and behind my uterus. she sized the right one at 10cm rather than the 9cm the CT scan said. not much of a difference and likely can be put down to just the difference between the two procedures. maybe not tho...the pain seems to be getting worse and worse. she explained the location of the left cyst much better - it is placed behind my uterus (likely causing my "pregnant" look) and in such a way that my uterus is twisted and almost folded back on itself! that certainly explains the clotting and intense rise in pain but I don't know about the heavy bleeding (forgot to ask that).

one rather disheartening surprise...my uterus is not enlarged. disheartening because I went into this expecting signs of adeno. an enlarged uterus would go a long way towards confirming that...now I just don't know. I keep hearing that an MRI can possibly diagnose adeno but the sheer cost of that is putting me off the idea. argh!!

so I've been going over and over in my mind what my symptoms have been like and how and when they've changed. at this point I have no idea how long those cysts have been in there so there's no way to really discern when and/or how they've affected the pain and bleeding. one sort of "landmark" period for me happened before we moved from MI, about a year ago now. it was the first time I ever seriously contemplated going into the ER. at the time it was the most intense pain I could possibly imagine and certainly my heaviest period to date. did I have these cysts then? I don't think it was a ruptured cyst, judging from symptoms I've read. other than that incident all I can say is that the pain has gotten worse and worse every month since I had my tubal in 2002. before that the pain was enough to keep me bedridden for anywhere from 2 to 4 days a month and I was tired for a week or so before and after. those things can be attributed to the endo and I'm fairly certain that's what it was. so what caused the rise in pain? adeno rearing it's ugly head or cysts? I just don't know but the lack of uterine enlargement makes me wonder and now re-think everything.

what I wouldn't have given for insurance over the past 3 years!! having to try to piece all of this together based on just my rather faulty memory feels nearly impossible. I should have been keeping better track, keeping up with the pain journal I've attempted off and on. I just can't tell what the h**l is going on now and I'm frustrated beyond belief. I'm Honkerblonked off at myself for allowing myself to get into a position where I couldn't get the help I needed...assuming, of course, that I would have gone in given my experiences with the heartless idiots calling themselves doctors.

now, given the lack of one of the key symptoms of adeno, I wrestle with the question, "hyst or no hyst?" I try to piece everything together and think back on the pain. I think about when and how the pain changed, specifically where it's been located. it's so hard now, even with hydroc coursing through my body it's hard to remember past pain with the current pain so fresh in my mind. all I know for sure is that the thought of a hyst has been in my mind since my tubal. the dr who diagnosed me put it in my head, saying that it was the only way to "cure" the endo. I know now, and have for a while, that's he's full of it and knows very little about endo...but the idea stayed with me. of course, he meant ovaries and all which is not what I'm prepared for now. still, I've been thinking about it for so long...it's as if all I needed was a little push (in the form of increasing pain) to put me firmly in the, "take it out now " camp. it's such a huge decision, how can I make it based on just this feeling, unsupported by any specific diagnosis? would it really help or would it just add problems? am I just so tied to the idea of it that I can't let it go now? am I completely crazy to still think it will help?

my family (mother, brother, and sister) keep telling me to listen to my body...among other things. my brother and sister are both awesome people. both are heavily into natural healing - my brother is a doctor of Chinese medicine and herbalist, my sister is a reiki healer (shameless plug - if you're in Colorado and want to look into reiki check out her website and give her a call!! Healing Pathways Reiki. my brother doesn't have a site to point you to and I don't want to give out his info without permission.). both of them have advice of the "meditate, listen to your body" type...and both are against the drastic step of surgery. me, I'm more in the middle. I think natural healing and the like can do wondrous things but I'm more than willing to seek traditional medical help for something like this. my sister understands the pain more, I'm almost positive she has endo though she flat out refuses the surgery necessary for an actual diagnosis. my brother, wonderful person and incredible doctor that he is...well, he doesn't get that aspect of it. still, the point is, what I keep getting from both of them is to pay attention to my body and open myself up to whatever needs to be done. I agree with that, wholeheartedly. the fact that I have done that, opened myself up to the best of my ability, and still keep coming back to a hyst as being the best course of action leads me to believe I'm still on the right track there. but...am I really as open to all possibilities as I think I am or am I just so stuck on this one idea that I'm not allowing anything else come to mind? such metaphysical questions so early in the morning...but I think about it all the time. I guess...I guess what I'm trying to say is that most of me remains convinced that a hyst will help greatly but I'm hesitant to go thru with it without some sort of solid medical reasoning behind the decision. maybe I just don't trust myself enough, maybe I'm too blinded by pain to really make that kind of decision without the impetus of a medical reason behind it.

the only thing I can really do right now is wait for my next appt and discuss all of this with the dr and hope for some clarity of mind. I think having Meatball home will help in that direction...I'm too stressed out right now, dealing with all of this on my own, to really think clearly. I know he will support any decision I make, all I need is the time and the peace of mind to make it.

please, please, please let the next appt be soon! I'm tired beyond belief of dealing with this! I've forgotten what it was like to not be in pain every day. I'm not even sure who I am anymore, my entire existence revolves around simply making it through the next day. I try to do things for myself (got my hair cut and colored yesterday! ), try to get myself out of that mindset...it's just so hard when the pain is a near-constant reminder. I'm so...tired. just tired.

edit: almost forgot - talked to Meatball yesterday about his plan to come home. of course, Mr. Murphy had to make an appearance and throw a wrench into the works. it seems the High Muckety-Muck of one of the companies he works for (it's a contract job...completely convoluted) will be coming in the first part of the 2nd week in May. :sigh: on top of that his replacement is coming in the first week and will, obviously, need some training up. so...ugh. the plan for now is for him to come home for a few days around whenever my next appt is so he can be here for that and then go back to be there for the Big Boss Man. I have to say that despite the setback I was left with the most wonderful feeling of love and support after our conversation. he made it quite clear how much he wants to be here for this appt since this will (likely...hopefully) be the one in which we make decisions on surgery. for him it means a 12-hour drive home, a few days here, a 12-hour drive back, a few days to a week there, and then another 12-hour drive home. the things this poor man is going thru to be here for me...it's incredible. he's already in a lot of pain, this will only make things worse for him. despite my grouchiness about a few things I am unbelievably grateful to have him in my life right now. I've never before gotten the kind of love and support I get from him, our relationship is what keeps me strong. despite everything, I am truly blessed...and I know it

wow! so many wonderful comments on my last entry (now only several hours old...)!! thank you all soo much for the feedback, I really appreciate knowing I'm not completely crazy.

as for that situation I will be talking to him about it sooner than expected...and I intend to make it known, in no uncertain terms, that while I enjoy the dogs (most of the time) and don't really have a problem with them sleeping with us (again...most of the time) I will not feel comfortable with them in the bed with me after surgery. under other circumstances I wouldn't allow dogs to sleep on the bed in the first place but seeing as how they pre-date me in his world (ummm...sort of) I don't have the right to come along and make him change his habits and theirs. I accept it and I'm ok with it, just not at that point. make sense? they are just too active and too attached to the idea that I am the intruder in the bed. if it comes down to it I will make Meatball buy an intercom set-up or something so he can sleep on the couch and still be reachable. very much not my first choice but it is entirely possible that Sir SprongsALot will absolutely not tolerate being banned from the bed. from where I'm sitting that's Meatball's fault for allowing it like he does in the first place, and yes...not having the dogs in bed with me is more important than having him there with me. I simply don't want to deal with it, not right after surgery. I deserve that much, I think. besides, mom's planning to fly in the day before surgery and then stay a week with us. I know she'll be checking on me constantly...and will likely ride his butt for me about the dogs and the sleeping arrangements

however, I don't intend to just b***h some more...I finally have good news!! guess what guess what guess what?!

he's coming home [size=large]next week[/size]!! he told me he got really drunk on sunday (unusual for him...I think I've seen him drunk twice in the 10 years I've known him) and just decided he needed to be home.

he said he wanted to make it this friday but he just had too much to get done and/or handed off. the only thing that sort of worries me is that there was talk of them offering him a permanent position, one where he could work from home most of the time with week-long trips to CT every 3 or 4 weeks. not ideal but far better than being gone all the time like now! I'm not sure what's going on with that now, he didn't mention it at all but he was at work when he called so that makes sense. whatever. much as I want to be concerned for our financial future, especially now, I want and need him home far too much to let that get in the way

he's coming home!!!

a conversation Meatball and I had while the kids and I were in CT last time keeps coming to mind...or maybe it was a phone convo just before we went...something like that. anyway, we were talking about surgery and recovery when he dropped a bomb on me - he mentioned that he's planning on sleeping "somewhere else" right after my surgery. his reasoning is that I'll be more comfortable without him in the bed...and the pugs will bother me. ok, yeah, not what I wanted to hear. it's things like that convo that make me think he really doesn't get it. I'm extremely uncomfortable with him not being at least in the same room with me, especially at first (and no, there's no room for him to sleep in anywhere but the bed if he's going to be in the room). And, no, I do not want the dogs in bed with me while I'm recuperating. the hardest part about that whole convo was that it left me with the impression that there wasn't any chance he'd, oh, let the dogs sleep somewhere else for even a little while. I made it clear that I was so not comfortable with what he was saying but it was left rather unfinished.

Meatball is the type of man who is absolutely devoted to his dogs. he thinks of them as his children, they have at least equal standing to his human children in his eyes. he says, with pride, that his dogs are more important to him that most humans...family excluded. I don't have issue with any of that. honest. it's one of his many idiosyncrasies that I find endearing, I really do. however...I am not so enamored of the dogs themselves. more specifically, I am not enamored of them sleeping in our bed. they're small, they don't really take up that much room, but they insist on sleeping as close to you as possible and on top of all the covers. Meatball will sleep in the most uncomfortable positions imaginable to keep from disturbing them. I won't. I've accidentally knocked them off our queen size bed countless times; even after sleeping in the same bed for over a year I haven't been able to "train" myself to miss them when I'm tossing and turning. maybe that's a mental block on my part but I will not sacrifice my comfort after surgery for the sake of the dogs. the conversation was basically left without closure and I'm reluctant to bring it up now, over the phone. he's so stubborn sometimes...as much as I hate to even think it I can't help but wonder how much of a fight it's going to be to get him to realize that I need him with me for my own peace of mind and I will not tolerate the dogs in the bed while I'm still recovering. maybe that last makes me a horrible person, I don't know and I don't really much care. I'm slowly getting used to them (yeah, it's taking a while) and I'm willing to continue getting used to it and all that...just not now. I know plenty of dogs who sleep perfectly fine on their own beds on the floor, there's no real need for him to be so obstinate about this. not now, anyway.

of course, part of the problem is that one of the dogs is so attached to him it's impossible to separate them. I won't even go into my thoughts on that the important thing about it is that this one dog likely won't sleep anywhere else. on top of that, the dog is jealous. he insists on sleeping between us whenever he can and when he can't he will walk over anyone in his way to get as close as possible. that includes walking on our heads. let's not discuss how he acts when he gets upset, the messes that need to be cleaned up. yeah. that's going to be a wonderful and relaxing recovery situation, isn't it?

what a pain in the a**. please, take it from me...a spoiled pug is not likely to be a good recovery companion. I have no idea how this is going to work.

I'm really starting to wonder what the US will show. I started out feeling rather foolish about getting it done, spending even more money on a test that isn't very likely to give me any more/better information than I already have, but the more I think about it and talk to others the more I'm really beginning to wonder if the CT scan report was just not quite what it should have been. there are things I would have expected to be noted that weren't, the whole report is less than one page long. I know dr. a wasn't pleased with it. so, maybe I should contact the hospital and ask them to have someone else look at it? maybe ask dr. a if he has plans to actually look at the pictures? the lack of information at my last appt has me worried, too...tho I think a lot of that is just nerves. I feel like I'm losing my mind sometimes, thinking about all this.

and how's this for stupid - part of me is scared that the US will give no indication of a need for a hyst. I've been thinking and reading about it for so long now I've got it all built up in my mind as the one thing that will help. suppose I'm wrong? everyone tells me to listen to my body...well, my body says the uterus has to go. I think...

I don't know...I'm thinking in circles these days.

which is another thing that's bugging the crap out of me. when I started taking the hydroc it made me soooo spacey that I didn't take my Evening Primrose Oil and St. John's Wort like I usually do. between the pain and the newness of the meds I was doing good to remember which piece of clothing went on which body part at that point. I started noticing that my head felt all sort of foggy...my eyes didn't want to focus quite right, I couldn't balance myself worth a crap (which made walking oh so much fun), stuff like that. I put it up to the hydroc and didn't think about it much until the day I didn't take any and nothing changed. I knew the stuff had to be out of my system after 30-some hours but I still felt...off. at that point I noticed my right led didn't want to cooperate with the rest of me. I was tripping over everything cuz I wasn't lifting my foot high enough off the ground. when I got too tired I couldn't lift my foot at all and couldn't seem to get my knee to bend properly. I lurched whenever I walked. now, to give a little background, I've noticed some pain and weirdness on the top part of my right thigh when I sit 'wrong' or for too long. I'm as sure as I can be that it's cuz of the cyst on that side, it presses on nerves and the like. makes perfect sense to me. but this stuff...this wasn't right at all. I prolly should have called the dr but I knew I'd be seeing him again after the US and I didn't want to pay yet another fee (same thing for going to a 'regular' dr). after several days of that I realized I hadn't been taking the EPO and SJW and started back up again. within one day all that stopped. now, the reason for taking the EPO in the first place was for it's anti-inflammatory properties. figured it couldn't hurt. was it really doing that much good? I'll admit I didn't think it was doing much but I thought that maybe 2 months wasn't long enough for it to really be doing anything yet. after that whole bit...wow. but doesn't that mean there's something seriously screwed up? is the cyst so d**n huge it's causing that many problems? the foggy head prolly not but the rest of it... scary. very scary. definitely mentioning it to the doc when I see him next.

in other great news, the plan to cut back on the cigs is failing miserably. :sigh: I know I need to. where the h**l did my willpower go?

b***h, b***h, b***h...I really wish I had something positive to say. I can't even report any good convo's with Meatball, seems we really don't talk all that much and all I ever hear about is how much pain he's in. somehow it seems completely wrong that both of us are suffering and we can't even help each other out. like I'd be much good, anyway.

at least the pain has subsided to 1 hydroc/day again. that's something. better than last week, for sure.

I just want this to be over. I want to sleep normally again. I want to be able to mop the d**n floor. I want to get the house in some semblance of order. I want to cook dinner, for god's sake! heh. that right there speaks volumes...I hate cooking.

finally called the dr about a refill on the hydrocodone. I'm not out yet, have another couple days depending on how the pain gets, but I fully expect him to have a problem with refilling it. he gave me 15 pills, it's been two weeks. managed to keep myself at only one for the first few days but the pain got worse and worse so I, of course, took more (3 a day...4 one day). I hadn't been spotting (yaayyy!) for a few days so when I started bleeding the other day I assumed it was my period, just early (yeah, big surprise). that would explain the rise in pain, it always gets to be almost unbearable just before and during my period. heh, well, it's stopped now so who knows what the hell is going on. all I know is I hurt and I'm gonna need more of those not-so-little pills. so here I sit, anxiously waiting not to hear the phone ring (the nurse said she'd only call back if there was a problem).

gods...re-reading that I almost sound like a junkie to myself! I hate it. I don't want to be taking narcotics. I've always been understanding of friends of mine who took painkillers, I didn't want to be one of those ones who looked down at them and assumed they had a problem. now I'm in their shoes and I find myself judging myself. I guess I've gotten too used to dealing with all this without a dr's help. I keep thinking it can't possibly be that bad...until I end up half-sitting on the couch and trying not to scream when it gets too bad. I hate that...I hate this whole thing.

on a better note - got to talk to Meatball for like 3 hours last night we talked a lot about what's going on and upcoming surgery. I've talked to him about what the surgery is going to be like, what it's going to mean, all that...but I keep feeling like he doesn't quite get it. I know, I know, he's a man I do think he gets it on some level but since he hasn't been here he hasn't been really involved in any of it. I really don't like that. I keep trying to tell him as much as I can but our conversations aren't usually that long...and, truth be told, it's not exactly what I want to talk about! still, he's coming closer and closer to understanding, I think. I gave him the HysterSisters link and told him about Mr. HysterSisters he may not get a chance to look at them, given his work schedule, but I hope he does. I think in his mind this is still just minor surgery. that and...he holds so tight to the idea of a 'happy ending', the fact that this could damage on our sex life, my emotional state, all of that...I don't think he really gets it. I don't want him to be unpleasantly surprised, I'd rather he know all the risks and then be pleasantly surprised

better than all that...there is a chance, very small but still there, that he may be home the first week of May instead of the 20th we're gonna see how the US turns out and then he may talk to the people he works with, see if they can live without him. I won't get too excited but that would be soooo wonderful!! I miss him so much...and I have to admit...the more this goes on, the worse the pain gets and everything else, the more I don't want to be the only 'responsible adult' here. it's hard to just keep the house livable (I'm not even going to pretend it's actually clean) and make sure the kids get to school...anything else is too much most days. either I'm in too much pain or I'm too out of it because of the drugs. I must have a really low tolerance or something... I can't imagine how any women out there deal with this completely on their own! at least I have the knowledge that even if he doesn't come home soon he will be home.

hmmm...that all sounds perilously close to a pity party...d**n it.

at least I feel pretty ok today. I hurt but not like the past two or three days and I'm not so 'foggy'. maybe I'll get my daughter to help me actually cook dinner

edit: no problem with the refill guess I need to lighten up a bit...people really are pretty cool around here, even the drs!

an ongoing list of things I want to ask/talk to dr about...my attempt at staying organized

ultrasound:
- is the uterus enlarged? --no.
- where, exactly, do these masses originate? --still unknown, likely the ovaries.
- more info on composition? --mostly cystic.
- why is the cervix so out of place? --because of the placement of the cysts; one behind and twisting and folding the uterus, one to the right.

other:
- could the cysts be the cause of the constant spotting?
- is the clotting related to the position of the 'left' cyst and it's contortion of my uterus?
- is the heavy bleeding and period irregularity related to the cysts?

concerns:
- instead of pain being related to bleeding it seems my bleeding is related to my pain. when the pain gets bad, if I haven't 'kept up' with pain meds, I bleed...when I get the pain under control, the bleeding stops.
- my right leg is acting 'funny'...sometimes. I usually take 4g EPO daily but missed several days when I first started taking the hydroc, just spaced it out. during that time my right leg started dragging when I walked, I couldn't bend my knee well, couldn't walk straight because of that. didn't hurt, didn't feel numb...just sort of weak kinda. taking EPO again seems to have cleared that up. could be because of the mass on the right side putting pressure on something there?

Endo:
- what is your experience with endo?
- what is your preferred treatment for endo?
- have you performed excision for endo?
- if so, how often/how many?
- are you familiar with the many different ways endo can look?
- do you believe taking the ovaries will help with endo symptoms?

Hyst:
- do you believe hyst will help in my situation?
- if yes, what kind of hyst do you see for me?
- lap assisted or no?
- what is your feeling on leaving the ovaries?
- what is your feeling on leaving the cervix?
- if the cervix is not taken out will there be endometrial tissue left to cause a 'mini-period'?
- what else might need to be taken out at this point?
- what will be sent to pathology?
- will you be doing any other biopsies?
- what about bladder problems post-hyst? what steps will you take to lessen the possibility?
- I likely have many adhesions due to endo. how will you proceed when these are found?
- will you use any of the available treatments to prevent or lessen future adhesions?
- how long do you think surgery will take?
- what kind of closing method will you use?
- when will I get a chance to speak with the anesthesiologist and explain that I will need anti-nausea meds?
- what meds can I take before surgery? which should I make sure not to take?
- what will be prescribed after surgery?
- what kind of prep will be needed for surgery?
- how long will I be in the hospital?
- what are the pre-requisites for discharge?

Recovery:
- will I have vaginal bleeding after surgery? what is 'normal'? what is not?
- what bladder problems will I need to watch for?
- what bowel problems will I need to watch for? will I need a stool softener?
- what other problems should I watch for?
- what do I need to do to avoid blood clots?
- will I need to deal with "swelly-belly"? how do you recommend dealing with it?
- what restrictions will there be on
+walking
+housework
+driving
+sex
- what do you recommend for exercise and at what point in recovery?
- what dietary concerns will I have post-op?
- when will my post-op visits be? will I have a chance to review pictures/records at that point?
- how soon after will I be able to make a 1500 mi trip by car (very comfy leisure van)?

If the ovaries need to go:
- do you recommend delaying HRT because of endo?
- will I talk to you about HRT or need to find an endocrinologist?
- what tests will be done to ensure hormonal health? when will they be done?
- do you prescribe bio-identical hormones?
- what HRT alternatives do you use/recommend? if one doesn't work for me, what are my options?
- do you prescribe testosterone replacement?
- do you recommend natural progesterone cream?
- what other supplements do you recommend?
- are there supplements/diet aids/foods you recommend I stay away from?

you might have figured out by now that I'm starting from the beginning here, going back over what's happened so I can sort of keep it straight in my own head :-) I like the thought of journaling what is already one of the most significant things I've been through. writing has always been a great release for me and boy do I need that now. I especially like the knowledge that this journal is on this wonderful site! it will be read by other women who will understand at least some of it, not like my regular blog which is read by people who can be...less than understanding.

so...the CT scan. not a whole lot to say about that except that I loved the nurse (or whatever her actual title would be). she was very kind and understanding, we chatted for a while about my endo and the mass. she was cheerful without being annoyingly perky I'm amazed at my luck so far with great nurses!

the scan itself was pretty much a piece of cake. drink some nasty/sweet stuff the night before, drink some more an hour before, get hooked up to the dye, lie still, and hold your breath when they tell you to. it did hurt a bit to lie on that hard table the whole time but other than that no problem. the kids even behaved thanks to Disney on the TV in the waiting room

I had been told it would likely be 3 days to a week before the results were in. imagine my surprise when I got a call the very next day and was asked to come in the day after that. of course I was happy to not have to wait but I'll admit I was a little freaked out by how quick it had been. me and my penchant for expecting the worst...I wondered if the reason they'd asked me to come in so quickly was because there was bad news.

my appt was for 2:30 in the afternoon, just 10 minutes before my son would be home from school and half an hour before my daughter would be. Auntie M couldn't help out that day since she had to work so I ended up having to take my kids out of school early and bringing them with me. what a pain....I hated to take them out for my appt but there wasn't much choice.

I ended up waiting a good 45 minutes before he came in. apparently he'd had surgery earlier that had gone long...at least the room had a TV in it

the very first thing out of his mouth? "How's your pain?" he asked me! I was sooo happy I told him it was better...not completely gone but better (more on that later). the next thing he told me was that my CA-125 was 270 I knew already that endo and other things can cause an elevated CA...but this was much higher than I'd expected. he was concerned but not overtly worried so I tried to just let it be.

highlights of the CT (from the copy of the report I asked for before leaving)- There is a large mostly cystic mass which appears to arise from the pelvis. I'm unsure whether this is actually 2 masses that are separate in the middle or whether they do blend together. The structure towards the right side measures approximately 9.0 cm round. Structure on the left is approximately 5.0 transvers x 7 cm AP. The etiology is likely ovarian in nature but there are multiple septations and some enhancing tissue around the cystic structures. sheesh...makes me tired just reading it!

I knew that mass was fairly large...but wow. and I had no idea there was anything on the left! well, I guess I sort of did since my cervix is pushed so far over to the right. still.

the dr's attitude reading the report confused me. he seemed to not quite understand what he was reading, like it was completely not what he was expecting. I'm ashamed to admit I didn't ask very many questions...but I'm making a list now! what was it about the report that he didn't like? was he expecting something different? did it not have enough info for him? I just don't know.

we decided to go ahead and schedule an ultrasound (pelvic and abdominal) to see if any more/different info can be found. I rather doubt it's going to give better info but a trans-vaginal, which I intend to make sure gets done, may at least be able to tell us if it these are ovarian. might be able to get a better idea of the composition, too. probably not but it's worth a shot, I think. I can't schedule surgery until Meatball is home, anyway, so I might as well do everything I can before then. right?

I'm fairly certain the dr is going to tell me that the ovaries need to go. even after finding out about these cysts I'm determined to keep them. I'm only 32, I'm just not ready to face surgical menopause! unless there is definite cancer or something equally serious I'm not willing to let go of them yet. I know I may be inviting trouble later in the form of further cysts...but I also already know I have at least one additional surgery in my future for my endo. if at that point the ovaries have continued to spawn these aliens they can go. not until then if I can at all help it.

I'm also trying like hell to not freak out about the CA result. I know it's not good as a diagnostic tool, especially since I don't have any baseline to compare it to. I know my other issues will give an elevated result. I know all of that but it's still seriously unnerving to have the result be so high. Auntie M is a medical transcriptionist, she says she's typed reports of women who had levels 1,000 and above that turned out to be fine...I just have to stay calm until I have more information. it's not easy, though!

as for the hydrocodone...I guess it's all right. at first it made me reallllllly spacey now I guess my body is getting used to it so that's not so bad. the biggest problem now is that it doesn't seem to be lasting very long. I still have to be very careful about what I do, how I sit, that sort of thing or the pain comes back. not nearly as severe as before but I haven't given it a chance to. I'm so scared of the pain getting to where it was! it still makes me feel pretty high...not sure I like that. makes it very difficult to get anything done. d***ed if I do, d***ed if I don't. I do worry that he won't be willing to prescribe more when I run out in about two days. I may call tomorrow (later today) to ask...I just don't want to be pushy, either, after his reaction at my first appt. by now his concerns should be alleviated but you just never know. I would really love for him to prescribe something else...something that won't leave me so out of it, but I'll take what I can get. it's only until I have surgery, after all.

so now I wait for the ultrasound on the 27th and then talk to the dr again. I'm making my list of things to discuss and ask and I will make the appt at a time when Auntie M will be able to come with me to make sure I get the info I want and need. I don't trust myself to get everything out being so spaced out on the hydroc. I would love to have Meatball there...I hate for him to be so left out of everything. I need him to have as much info as possible too; I would love for him to have the chance to get his own questions answered. I'll be asking him what sorts of things he wants to know so I can ask...it's just not the same.

my first appointment was made for April 7th at 9 am. I desperately wanted someone with me and since Meatball isn't here, as well as my own family, I asked his Aunt to come with me. she is the one person here I am closest to, I absolutely adore her! that makes sense once you know her, she and Meatball are very much alike. only 12 years separate them (meaning only 13 separate her and I) so they are almost like brother and sister. when he and I got back together a year ago she was ecstatic for us, she told him she'd always liked me actually, that's pretty funny...considering we'd never met before this was a practical move on my part as well, since I still don't know my way around very well yet (being in too much pain to drive will put a serious damper on your ability to explore a new home state).

we were late for the appt but they saw me anyway. I had obviously talked to one nurse when I made the appt and had gotten the impression that she was a caring soul. this was confirmed when I walked in, very obviously worried that I would be sent home. she just smiled and said they would never do that as she handed me the surprisingly small packet of information to be filled out. from the moment I talked to her I felt good about this place.

when I was taken back to the room the nurse I then saw was also very kind and caring. she looked at me with understanding. at that point I figured even if I ended up not liking the dr very much at least his staff made the appt worth it! it was unbelievable for me, to have any one in the medical profession take me seriously. I'd never had that before.

when the dr came in he was 'all business'. he wasn't mean, he wasn't sweetness and light, he was very professional. I don't have my medical records from my tubal and endo dx in CO (for the life of me I can't remember the drs name or where exactly his office was...I'm working on this now) so he took a very thorough medical history. as is always the case he was surprised to hear that I had my gallbladder taken out when I was only 17! we discussed my endo diagnosis some, he asked what stage and all I could tell him was that the dr who dx me said it was "severe" and he'd had to free my ovaries from my uterus. nothing more was said about it then and we haven't discussed it since except in passing. nothing I said to him, including the amount of painkillers I'd been taking, seemed to faze him. I explained the severity and location of my pain (uterus and right side) and I told him about the changes in my periods. I got the impression that he'd heard it all before and was confident about being able to help me.

then it came time for the dreaded pelvic exam. I was already in so much pain I couldn't sit still on the table. when he came in I was lying in a fetal position, barely able to move and talk. by the time the pelvic came around I'd managed to move some and, obviously, have a conversation...barely. Auntie M opted to stay with me, for which I was grateful. it didn't bother me at all to have her in the room during such a private exam, I was simply glad for the support.

I had told the dr that I was spotting continuously, I had expected him to not do a pap since the results wouldn't come out right. he opted to try anyway...but then came the first surprise - my cervix is pushed so far to the right he had to tilt the table backwards, causing my 'insides' to pull back, before he could even get to it! he seemed shocked by that. given his matter-of-fact attitude to that point I was shocked myself at his reaction. I hadn't expected anything quite like that, either! he did eventually get there and told me that my cervix looked fine, once he could find it.

next came the fun part...actually feeling the mass and trying to determine location, size, and movability as best as he could right then. I thought I was going to come unglued!! he was as quick as he could be but thorough, talking about what he was feeling and even closing his eyes at one point to better visualize what was going on. I was too busy trying not to scream but Auntie M paid close attention to what he was doing and saying. she told me later that she was very impressed. he noted that the mass moved with and just like my uterus, leaving me to believe that it was a fibroid attached to the uterus itself. I'm still not clear about that. Auntie M and I both thought he seemed slightly perplexed by what he felt but neither of us was sure why. this was the time when I most wished Meatball had been there with me, he would have known more about what kinds of questions to ask then (what did he feel? what did he think it meant?). Auntie M only knows the very basics of what I've been going through, she really didn't have a clue what kind of information I might want.

after the pelvic it took me several minutes to even sit up. I was literally shaking from the pain and the effort it had taken to not scream or thrash about. when I could stand on my own Nurse #2 took me to have blood drawn for a CA-125 (he's a gyn-oncologist, remember? ) and CBC. she was wonderful then, too, making sure I was really ok. I told her I'd been through worse.

the one thing that really bothered me about the appointment, even though I understand it, was the dr's reluctance to prescribe anything for the pain. that had been my number one goal in making the appt when I did. I knew I'd be having surgery, I'd already decided I want my uterus and that mass gone so I could be rid of at least that much of the pain, but making the appt so far in advance of Meatball's ETA home (in other words, so far in advance of when surgery could happen) only made sense to get some sort of pain relief. when I asked the dr about it he immediately said, "no" and almost didn't let me even try to explain. he was absolutely adamant about it, to the point of talking over me when I tried to explain that I was in constant, absolutely unbearable pain. I tried to tell him what meds I'd already tried (Vicoden, hydrocodone, ibuprofen, acetaminophen (often in combination with ibuprofen), Naprosyn, naproxen sodium, and Celebrex). he just kept talking over me, his voice getting slightly louder, telling me that narcotics were too dangerous and hinting that I was simply looking for the high. now, I understand his position...sort of. drs can get into serious trouble for mis-prescribing narcotics. my mom works for the licensing board, I've heard all the horror stories. here this doctor has a young woman with no medical records walk into his office and ask for narcotics. yeah, I can see his point. still...he'd done the pelvic, he'd felt the mass for himself. he'd seen how much pain I was in. I almost wanted to cry. finally he did "slip" and mention something about being able to prescribe "something mild" and then backed off. at that point Auntie M spoke up and asked for something mild so that I could at least get some sleep. he gave in then. Auntie M and I both think that it was her being an older woman that tipped the scales in my favor.

the only other surprise was that he wanted to have a CT scan done, rather than the ultrasound I had expected. I hadn't even thought of a CT scan but it made absolute sense and I was then very glad to have chosen him.

getting the prescription at the end of the appt was somewhat of a chore. I knew he had other patients but I hadn't expected to be kept waiting for 15 minutes before he got it to me. I had to ask a nurse to go back and get it from him...Auntie M and I wondered if maybe he'd hoped I'd just leave without it. when the nurse came back and gave me what he'd written out I was almost in tears again. he'd prescribed Lortab, a.k.a. 7.5mg hydrocodone with 500mg acetaminophen, two drugs I'd specifically told him I'd already tried. when the nurse heard that she did her best to go to bat for me (have I mentioned how much I his staff??) but he didn't budge. in the end I decided that it would be cheap enough and the hydrocodone was a slightly higher dose than I'd tried before (7.5mg vs. 5mg), I might as well at least try it.

I left the appt feeling both better and worse. better because I was finally on the road to healing (I hope!) and worse because it was finally sinking in how difficult a journey this would be. I knew going in that I couldn't just walk into his office and say, "Hey, this is what's going on. I want you to cut me open and get rid of it." but some part of my brain had refused to accept the time and money that were really going to be involved. I'd just spent $340 dollars on the office visit, would be getting another bill for $32 for lab work, and would be spending $15 at the Wal-Mart pharmacy for a two-week prescription of painkillers. I now had an appt for the 12th for a procedure I'm still not sure of the price of...likely $1000 or more. I knew, intellectually, that it wasn't going be easy...sometimes I just need to have these kinds of things pounded into my head.

see, my biggest problem with the money is that every cent we spend brings us that much closer to Meatball having to take another contract...possibly (likely) one out-of-state. after what I've been going through this time it's hard for me not to panic about that. I simply can't do this again. I just can't! even though I know, in my head, things will be better after surgery...my heart can't quite believe it. I've been in pain for so long now it's hard to imagine life without it. **** near impossible.

the other thing is this - I will be doing nothing for the endo I know I have. I truly, honestly believe that once my uterus and that thing is gone the pain will diminish greatly...but it won't go away. I flat out refuse to take the drugs that drs are so keen to prescribe, the ones that have such horrid side effects and very little in the way of benefits. there is no such thing as a cure for this disease. the only sure way of guaranteeing true relief is through excision with a specialist...which my current dr is not. if I thought I could hold out I'd wait until we could afford the trip to a specialist...but I can't. I wish to god I could, I really do. I want so much to be completely better again but all I can do right now is accept what amounts to a rather serious stop-gap measure. it goes against everything in my nature to do that. we're spending all this money, the money that Meatball has been working so hard for, on something that will not take care of everything. I absolutely hate that....I just don't know what else to do.

in November of this year Meatball took a contract in CT (he's an independent contractor, software engineering). we had moved a few months prior, from MI, and were steadily eating up the savings we had. jobs are hard to come by here, especially in his field. jobs were popping up all over the place...just not close to home. I had serious reservations about him being gone for so long, mostly because even then I had very little confidence in my ability to take care of the kids, the house, and the pets on my own while dealing with the pain. I have no family here, they're all back 'home' in CO. the only people I know are his family and I've only become somewhat close to one of them. it's not that they're bad people or anything like that, I love them all, it's just that I am a relative newcomer to the family (sort of...but that's a whole other story) and they all have jobs and lives of their own. I knew I'd have to endure whatever came pretty much on my own.

for a while things seemed to be working more or less ok. I was 'managing' my pain with 800mg of ibuprofen every 4 to 6 hours when it got too bad and it seemed to be working pretty well. generally it took enough of the pain away to allow me to do a load of laundry, maybe two. I learned to take it more easy on myself and not freak out about the house too much...most of the time. I won't pretend I liked any of it but I figured I could make it through the 6 months that he'd be gone.

to back up just a little...in September or October of 2004, just after we moved from MI, Meatball had to go back to Detroit to finish up at his job. we desperately needed the money this would bring in and he's responsible like that this meant that the kids and I were here with some of his family that were living with us then. while he was gone I noticed a 'mass' on my right side, to the side of my uterus. it didn't hurt even when pressed, it was simply annoying (I couldn't sleep on my stomach any more ). I didn't mention it to anyone at first; I didn't want anyone to worry and there was nothing we could have done anyway. I hadn't had medical insurance sine just after my tubal in 2002 and we just didn't have the money to pay out-of-pocket.

about 3 months into Meatball's contract in CT things started deteriorating for me. the pain no longer stopped. ever. the ibuprofen become a constant, every 3 to 3.5 hours, and more often didn't help at all. when it did help it just 'took the edge off', almost never did I get full relief. my periods also started changing, becoming heavier and filled with small to medium clots. the pain during my period became excruciating, no amount of painkillers helped then. I would be completely bedridden for a week at a time, unable to even cook dinner. luckily my children are old enough to at least make sandwiches for dinner I also started spotting nearly constantly, needing a pantyliner throughout the month. to add yet another embarrassment I began having some slight incontinenence issues...nothing major but enough to make life unpleasant even when I wasn't in severe pain.

because of the research I'd done and the stories I'd heard from other women I began to suspect adenomyosis, a condition where endo grows within the muscle of the uterus itself. the pain was mostly centered there and in the 'mass' I had noticed. adeno wouldn't explain the mass but I refused to think about that too much...I was too scared to admit that it might be a serious problem. I tried like hell to just make it through the next few months until Meatball would be home, knowing that without his help with the kids and the house adding doctor's appointments would be next to impossible. also, I didn't want to deal with it all by myself, I wanted and needed him with me for support since I have no one else here.

finally in March it became too much to bear. I knew I couldn't deal with the pain any more. I didn't have much a life before, now I had none at all. my days revolved around ibuprofen doses and naps, when I could sleep at all. I wasn't sleeping more than 4 hours a night, I would continuously be woken up by excruciating pain. as I wrote to one friend, "I am not suicidal at all but at that point I would have welcomed death if it would give me relief from that relentless pain." even though I still wasn't sure how we would manage it financially I found a dr and made an appt.

I should note here that I have almost no faith in gynecologists any more because of the way I've been treated all my life. I know now that very few 'regular' gyns even recognize endo and/or adeno, much less know how to treat it effectively. I wanted to give myself the best shot I could at finding someone who might possibly take my pain seriously so I chose the only doctor I could find within a reasonable distance (still a 40 minute drive away) who might be able to help - a gyn-oncologist. at the time my reasoning was that as an oncologist he might take the pain more seriously and might have more of a clue about severe female issues, not to mention that I'd trust him more when it came time for surgery. I made the appt knowing I was going end up having a hyst but I was (and still am!) bound and determined to keep my ovaries if at all possible.

having this journal was the biggest reason I went ahead and upgraded my membership...well, that and wanting to help out this wonderful site basically I want a place to put my thoughts about this journey, someplace besides my regular blog (shameless plug - ChickeePoo v3.2 ).

hmmm...but where to start?

basic background on me - I'm a 32 year old mother of 2; a daughter aged 12 and a son aged 9. we live in West Virginia with the love of my life, my son's father. online I call him Meatball, hence my own nick here

I've dealt with pain during my periods for years. sometimes horrible, sometimes controllable with massive doses of painkillers. for a long time it was only during my actual period, 2 to 4 days a month. I would be extremely tired for days before and after my period, the only thing I felt capable of doing was napping. the pain and my screwed up hormones made me nauseous. when I would bring it up to a doctor I would be told it was normal and to just deal with it. after a while I stopped complaining about it.

I can't say that I had any problem whatsoever getting pregnant. my daughter was conceived while using condoms and my son was...unplanned. both pregnancies were normal, both children born very healthy. while I was pregnant and for a few months after each birth (I breastfed both) the pain was gone...but it came back each time.

in August 2002 I had my tubes tied. I had two beautiful children and I was a single mom still dating. I couldn't take the chance, however remote since I was using birth control, of being a single mother of three. I had no complications, the surgery went just fine. at my post-op appointment the dr told me I had something called endometriosis. this was what was causing my pain and other symptoms as well as numerous adhesions. he told me my ovaries had been completely 'glued' to my uterus but he had 'freed' them (cut the adhesions away). the only two choices he gave me for treatment were menopause, either surgical or medical. he told me that if the hormones that 'fed' the endo were gone the endo would 'dry up' and go away. I wasn't comfortable with those options, I was only 30 years old, and I opted to do my own research. soon after that I lost the only medical insurance I had and didn't have any other treatment for years.

at that point I fired up my trusty laptop and started my research. I found out that dr didn't have a clue about how endo works and I found a wonderful, supportive, and extremely knowledgeable email list through the Endometriosis Research Center - this place and others taught me that I had likely made the right decision to not either have the surgery or take the medication. unfortunately I still had no insurance and my symptoms were getting worse and worse. I couldn't find and/or keep a job for medical benefits.

I wonder now if having my tubes tied somehow accelerated or led to the problems I have now. for the past two years or so my symptoms have gotten exponentially worse. my periods are much heavier and full of clots. the pain became both more intense and more constant, to the point where it is now daily and needs hydrocodone every 6 to 8 hours to keep down.

ok, I think that's enough for now...just a bare beginning