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Monday, January 26, 2009


Is it sad that I feel somehow special because I have been tagged? lol....thanks Jenn for the tag, and the use of your picture here that I didn't ask for!

1) I took my first shot of lupron today. Those of you who follow the blog will hear all about it tomorrow when I have real coherent thoughts.

2) I sometimes miss the cat I had for 14 years growing up. RIP Attic!

3)I go through animal fazes where for a few days I am a dog person and for a few days I am a cat person. This confuses my animals!

4)I was very close to living in England a few years ago when my ex-husband was facing deportation. Being still married to him would be hardly be worth the culture!

5)Some of my best friends I have never met in real life. This includes my endo sisters and Dan (not either husband lol) with whom I have had a pen-pal relationship with for over 10 years

6)I have a sister who is gay and since finding this out have become very interested in reading/learning about the gay community

7)I read so fast its scary. I can literally sit down and read a large "chapter book" or novel in a few hours or less. I tried once to write down and count all the books I have read and I stopped counting at 3,432.....and before you ask that is a real number I just looked at my list!

Jenn-ha ha I wasn't going to and you talked me into it
Sonja-you should feel special (cause you are) cause you are tagged at least twice!

Sunday, January 25, 2009

My fears.....

I am seeing my new doctor tomorrow. She is supposed to be this really great RE (reproductive endocrinologist) who has helped hundreds of women in my situation. I am scared to death.

First off.....if she says that there is a chance I can get pregnant...what will the cost be? Never mind the financial strain that we are already under just trying to keep me comfortable because of the PCOS and endo....but more fertility treatments than I have already tried cost literally hundreds and thousands of dollars. How could we ever afford it? No insurance and only one income does not rich people make. And thats not the only cost. How much longer can I be in pain and "just deal" with it because I so desperately want to be a mother? How much longer can I put this strain on my marriage because we want a child to share our love with? How fair is it to try like hell to being a child into my life when I am still so sick and in so much pain that I may not be able to care for them the way they deserve? There are so many more costs to consider other than money. In fact, money is the least of it. I would find a way to get the money if that was my only concern.

Then there is the fear that I will hear what I am sitting here tonight trying to prepare myself for. That the chances are so low that it would not even be worth it to try. I have always thought that there might be something wrong with me in the reproductive department, but when I was with my ex-husband I just thought that God was looking out for me and not letting me get pregnant because he knew that he would have been a bad father. But what about now? Now I have a man who would be a fantastic father....who loves me and would love any child that we would be blessed with. I always thought that it was Daniel....I thought, "thank God he couldn't have kids cause then I would still be tied to him" I guess it was me that whole time. Long story short I have been thinking about this for years and here I am about to be faced with the possibility that it will never happen for me and my heart is breaking. I am crying every other hour because I hear the doctor telling me what I am so scared will be true. I am infertile. And the thing is I might get awesome news tomorrow but what if I don't? Even though I am trying like hell to prepare for the worst I know there is no way I will be able to hold it together if I get the news that somehow I already know is coming.

And then there is what to do next? What to do if the news is bad and then we have to deal with the next steps....the steps to get me out of pain and on with my life? I talk all the time about how if it comes down to it I would be ok with having my ovaries removed or even having a total hysterectomy....but really thats just talk. It sounds all well and good to act strong when you are sitting there having coffee with your mother...its a whole other thing when you are sitting here in the middle of the night not able to sleep going over and over it in your head. On the one hand....I would KILL to never have another period again...but then again what women wouldn't? On the other hand how would I ever deal with that inevitable feeling of not feeling whole? Two very good friends of mine recently underwent hysterctomies due to adenomyosis. (I will place a brief description at the end of this blog for those of you who are interested.) These are two of the strongest bravest women I have ever had the pleasure of calling friends....and even though I know it is never as easy as it sounds...they are dealing better than I ever could. You read stories about how women without breasts because of cancer or things like that come to the realization that they are still whole women even though they are missing the most outward feminine part of them. These women are stronger than me I think. I still have all my girlie bits and yet I feel broken and not whole would I feel if I didn't have my uterus anymore? Or even if I didn't have my ovaries? Even right now, sitting here, I feel as though what defines me as a woman is somhow inferior to others. The logical side of me tells me that this just isn't true....but my poor broken heart sees it differently.

This damn depression scares me too. I have always gone through bouts of depression even when I was a child...and I can tell when its just a passing thing or if I am in for months or even a year or more of serious battling with my own head. This one is getting bad. Before you all freak out and say I should see someone I fully intend on asking the new doc tomorrow for a referral. But seriously...who wouldn't be depressed with all of this stuff going on? Every minute of every day of my life I am thinking about all of these things. It has gotten to the point that I have to have the TV or radio or SOME kind of noise going on at all times just so that I am not overloaded with the screaming thoughts in my head. I put the TV on sleep for three hours and then somehow sometimes I am able to get to sleep. I ask dan to turn the TV back on when he leaves to work so when I wake up I will have something to focus on that isn't my own thoughts. Even while reading I have to have the radio on in the backround because if I don't I somehow see myself and relate everthing in the book to what is going on in this crazy head of mine. I fear seeing someone for this. I was on so many pills for so long when I was a child that when I turned 18 and could take myself off of them that is exactly what I did....because I really thought that I didn't need them, and for the most part I was right. I have been without anti-dperessants since then and I am afraid if I talk to someone they are just going to want to fill me up on prozac and send me on my way. I know all to well the side effects of these kinds of medications. I believe that they can so some people some good....but I also believe that most doctors use them as a fix-all and they are only using that particular pill that particular day because someone from that company bought them lunch the week before. I should stop talking about this now before I go off on the problems and my opinions on drug companies!

So that is today. All these things running around in my head and not a damn thing to do about them but write. It does help though...getting all these things out there into the world. I can say things when I write that were I talking I would search for hours for the right words. For those of you reading this, thank you for listening. And for those of you who are battling the same things I am and know where I am coming from, I hope that you get everything you desire and my prayer is that one day there will be a cure for our ills and these thoughts will be but a memory. God Bless you all.


Adenomyosis is a medical condition characterized by the presence of ectopic endometrial tissue (the inner lining of the uterus) within the myometrium (the thick, muscular layer of the uterus).

The condition is typically found in women between the ages of 35 and 50. Patients with adenomyosis can have painful and/or profuse menses (dysmenorrhea & menorrhagia, respectively).

Adenomyosis may involve the uterus focally, creating an adenomyoma, or diffusely. With diffuse involvement, the uterus becomes bulky and heavier.


The cause of adenomyosis is unknown, although it has been associated with any sort of uterine trauma that may break the barrier between the endometrium and myometrium, such as a caesarean section, tubal ligation, pregnancy termination, and any pregnancy.

Some say that the reason adenomyosis is common in women between the ages of 35 and 50 is because it is between these ages that women have an excess of estrogen. Near the age of 35, women typically cease to create as much natural progesterone, which counters the effects of estrogen. After the age of 50, due to menopause, women do not create as much estrogen.


The uterus may be imaged using ultrasound (US) or magnetic resonance imaging (MRI). Transvaginal ultrasound is the most cost effective and most available. Either modality will show an enlarged uterus. On ultrasound, the uterus will have a heterogeneous texture, without the focal well-defined masses that characterize uterine fibroids.

MRI provides better diagnostic capability due to the increased spatial and contrast resolution, and to not being limited by the presence of bowel gas or calcified uterine fibroids (as is ultrasound). In particular, MR is better able to differentiate adenomyosis from multiple small uterine fibroids. The uterus will have a thickened junctional zone with diminished signal on both T1 and T2 weighted sequences due to susceptibility effects of iron deposition due to chronic microhemorrhage. A thickness of the junctional zone greater than 10 to 12 mm (depending on who you read) is diagnostic of adenomyosis (<8>

MR can be used to classify adenomyosis based on the depth of penetration of the ectopic endometrium into the myometrium.


Treatment options range from use of NSAIDS & hormonal suppression for symptomatic relief, with hysterectomy the only permanent cure option. Women with Adenomyosis fail endometrial ablation because the ablation only affects the surface endometrial tissue, not the tissue that has grown into the muscle lining. This remaining tissue is still viable and will continue to cause pain. The result of failed ablation due to Adenomyosis is hysterectomy.

Those that believe an excess of estrogen is the cause or adenomyosis, or that it aggravates the symptoms, recommend avoiding products with xenoestrogens and/or recommend taking natural progesterone supplements.


There is no increased risk for cancer development. As the condition is estrogen-dependent, menopause presents a natural cure. Patients with adenomyosis often also have leiomyomata and/or endometriosis.


Saturday, January 24, 2009


I wrote about my endometriosis story a few days ago like that was my only problem....but I also suffer from PCOS, and lately it has been giving me even more grief than the endo. I thought I would write a quick blog just introducing all of you to PCOS and the smptoms and why having this disease along with endo is a double sided knife.

PCOS is basically an endocrine disorder that stems from an overload of testosterone. There are so many more things that stem from this than just ovarian cysts. Obviously this is one very big symptom but there are so many more that affect women everyday. Here are just a few....

I have more than a few of these. My periods have never been regular. I remember when I first started trying to have a baby with my ex-husband I never knew when to get excited because I would bleed randomly for a few days at a time without reason or schedule. I was told by my doctor at the time that this was normal.

Obviously I am having troubles with infertility.

I have hair that grown randomly all over....the ones that drive me nuts the most are the five long, thick, and deep-bedded hairs that just appear overnight on my breasts. Drives me insane. I shave them off and I always look and never notice them growing back and then one day I look and there they are....looking like they have been growing for weeks.

Acne. This is one of the worst ones. I have tried every single face wash, cream, treatment, anything you can think of for my face and nothing seems to help. My mother used to tell me that everyone gets acne and that it was normal, but the fact is that after a certain point it is no longer "normal" to get frequent breakouts of this nature. They are deep, red, and painful...."face cysts" I guess you could call them....all over my face, chest, neck, and back. There is no schedule to the breakouts....teenagers often break out close to their periods but in women with PCOS there is no rhyme or reason for these breakouts. They are the single most outward sign I have that there is something wrong with me.

I have always been a little overweight. I thought it made me look like a "real" woman instead of those girls out there that are tiny and all that. Come to find out the reason all my weight is all around my middle might not just be my genes. Even when I eat right and exercise I am still always just a little bit big around my middle. My husband is ok with it, and until I started reading about the effects of PCOS I was ok with it too. Now I am worried that if I somehow don't get my weight under control I will be in a world of hurt not long from now.

Obviously all these things can cause a girl to become depressed. There are girls out there who are overweight and think themselves somehow less of people because of that. I am depressed. I am sad because I can't have a baby and because when I look in the mirror I have to look away because my face is always broken out and I am fat. I hate that I have done nothing to deserve or even cause these things. My life revolves around just convincing myself to get out of bed in the morning.

The treatments for PCOS vary depending on who you talk to. Basically all I have been on is a very low dose of Metformin everyday, and I was only diagnosed that after three months of clomid not working. From what I have read I prolly should have been on at LEAST this med from the beginning....unfortunately the last doctor I had that I had to fire was a complete moron who didn't even tell me I had PCOS until she found a very large cyst after a few months of Clomid.

Long story short this thing that I have (on top of the endometriosis) affects my life every day. There is no cure, and like endo, no one really knows what triggers the body to have too many hormones that in turn cause prayer is that one day there will be relief for me and the millions of other women out there living with PCOS.

Wednesday, January 21, 2009


*just because I wasn't in mind-numbing pain when I was younger does not mean I was not in pain and I would never want anyone reading this to think that I am somehow saying that severe symptoms went unchecked in my childhood. The worst of the pain started sporadically three years ago and got steadily worse to the point this last summer when I was severely sick. Just a quick note to clear up any confusions or misunderstandings*


My life revolves around infertility. Those who have ever had to really look at themselves in the mirror and know that the reason they were put on this earth is broken....those people understand. Or maybe they don't. I know that I don't. I will never understand what it was that I did that caused this to happen. I will never know why out of all the bad parents out there I was chosen to have my ability stripped from me. I will never know why simple words that are meant to be helpful just hurt more. I will never know.


I am in pain today. I think it is worse because of stress...I had a HUGE fight with my sister yesterday and not long after that my ovary started hurting like hell. It never fails that the pain comes along when I least need it....I am supposed to have dinner with my husband and his family this evening and I really don't need to be high on pain killers when I do. It seriously feels like something is stabbing me, and all it really does is remind me that I am infertile. I have told everyone that if I could just get out of pain it would help with my depression because pain just reminds me that I am broken and can't have a baby. I don't know. I really need to be able to go back to school or work or something so that even when I am in pain I can at least be busy and not here thinking about random things and writing them in a blog that no one really reads. I am just sad and in pain today. I don't know what else to say.

Tuesday, January 20, 2009

Pain killers......

I had to take Vicodin twice today. Right now as I sit here writing this the second dose is kicking in. I thought I would write about how exactly these things make me feel....because I know not everyone has had narcotic pain killers...and certainly not as often as I have to take them, so goes....

About 20 minutes after I take these things they kick in. Percocet is quicker but I didnt have any tonight so we will focus on what I DO have......I can tell the second they kick in. Its like a wave of relief and highness all at the same time. If I concentrate long and hard enough I can realize that the pain is still there just as bad but its like I am feeling the pain through a cloud of the highness. I can totally understand how people who dont need them could become addicted to these things.

The pain killers usually only last a couple hours, and you are supposed to wait a few hours before taking another dose, but I don't know about the rest of you who have endometriosis and/or PCOS but I usually just take another when the first dose wears off. The pain overrides my concern for my liver most of the time. I take Milk Thistle every day because I am really afraid that one of these days my liver will give out on me too because of all the pain killers I have to take.

I worry that I am actually addicted sometimes without "actually" being addicted. Its hard to explain, but when I first started taking these kind of pain killers it seemed like I could get relief with the lowest I have to self-medicate almost just to be able to function when things are at their worst. I know I am not a druggie, but I still feel like that sometimes people who don't understand will see me as one because I will be in the middle of walmart or something and have to pop a pill. Like I need these worries on top of everything else?

I look forward to the day when I am in the kind of pain that will go away with a aspirin and a hot bath. I still remember those days..those days before I was so sick....before I was broken. I am so tired of feeling broken. All the pain killers in the world will never change that. There is no fixing this....only covering it up in a cloud of narcatics.

Sitting on the bathroom floor

I have different kinds of pain every day. Sometimes there is ovary pain, sometimes there is uterus pain. Sometimes, well, mostly, there is mental pain. Today especially. I wish that I was pregnant. I always wish that I was pregnant. I find myself even after bleeding for days at a time in the middle of my cycle thinking that maybe it has happened this time. Maybe this time I will get my miracle. Then I end up at the store buying pregnancy tests that I know will come out negative but I still take them and hold my breath and wait for the timer to stop and then I sit on the bathroom floor and cry. It is some sort of strange thing that I do to hurt myself maybe. I don't mean to do it, I don't mean to take all these tests. I just do. I just keep waiting for my miracle that never seems to come. I hate it. I hate the physical things that make me a woman, and if I hate those things, those things that define me, don't I also hate myself? Who knows. Either way....I sat on the bathroom floor early this morning and cried. Just thought I would send the question "why" out into the world.

Monday, January 19, 2009

First Post aka intro to ME!

Okay so I used to blog all the time about many many things, mostly on Myspace or Facebook, but now mostly all I want to write about is my body and the stupid horrible things that are happening to it....and really there are people who have access to my myspace and facebook that I don't really want to read all these things. Sadly there are people out there who used to be in my life who would use my pain to make my life even more icky. So now a little about me!

My name is Sara Jean...although really the only people who call me that are over the age of 50 and share my genes! I am 24 years old and I live in Hiawatha, Iowa with my handsome husband Dan. We have three dogs, a beagle named Juno (who may be the focus of many of my blogs because when my life isn't revolving around pain and thoughts of sickness it is revolving around what the stupid dog has eaten that day!) a female Shih Tzu named Sassy and a male Shih Tzu (Sassys son!) named Romeo.....although mostly he goes by fat dude or fuzz-face. We also have two cats, Boy-cat and Girl-Cat. This sillyness comes from me being such a re-re that I named my male cat Calliope without realizing until much later that my little sweet Callie-Cat had grown balls, therefore we just started calling him Boy-cat. Soon after I realized I had to ability to have little kitten babies all around I got a girl and couldnt think of a name, so Girl-Cat is was!

Anyway, I have gotten off subject, this is about me. Okay what else? I was married before. Yes, I am only 24 and I was married for a very long time to a very mean man. I have known domestic violence at its worst, and I have no tolerence for men who hit....or are just mean for that matter. Long story short he beat me and I left him. That relationship will probably come up a few times because along with the endo/PCOS/infertility/the crazyness that is me causing low self-esteem, that relationship is something that I will be getting over for the rest of my life.

I don't suppose that there is anything else of interest to tell. I have two younger sisters, Maggie and Nancy. Maggie is revently married and seems to be pretty happy in the newlywed role. She recently got her teaching degree so soon may be teaching your kids! Nancy goes to school in Colorado and if all goes well may someday be arresting your kids...just kidding (I hope!). My parents are still married and still icky-make-me-puke-go-nuts in love...although now that I am in a good marriage I kinda see the cuteness in it. My dad works for the railroad and although he as told me many times I have no idea what he actually does because to tell you the truth I decided long ago it was just grown men playing with toys and kinda tune him out when he talks about it. Truth be told I think part of me resents his job because it brought me to Iowa, which I hate....but that is a whole other blog!

So there is me....or well, me on the surface. There is so much more to me then even my husband, who knows me better than anyone, knows. There are things that I wish I could scream off the rooftops and shout to the sun but I feel like I can't because most of the time I already feel like people are looking at me like I am nuts. So now on to the shouting at the sun (or whoever happens to read this)!

MY ENDO STORY (short version)

Long story short I have known for years that there was something wrong with me. I just never felt "right." I started my period when I was 9, and I remember thinking that I was so excited because I was like a womanly and stuff. Nuts to that! If I had known then what I know now I would have probably pitched a little 9-year-old fit and refused to be a girl. Anyways...all the way through middle and high school I had HORRIBLE cramps with my period. Like, I remember one day telling my mother I thought my utereus was falling out. I was like 14 and probably really thought that is WAS falling out because at that point I had no idea what it couldpossibly be, other than the "gift" that was girlhood. I always just popped a midol and went on with my day, which at that time pretty much consisted of smoking weed while skipping class and thinking I was somehow cool. (note-I have not done any sort of drug that didnt have my name on the bottle in a very long time, although I won't lie, I was a very large pot-head in my younger days.) forward........ZOOM

18 years old. With my first husband, Daniel (not to be confused with my current husband, Dan. I know its hard...just pay attention hehe) Pain getting steadily worse all the time. Nothing I couldnt handle, and nothing that kept me from any job that the ass wouldnt let me get (like I said..WHOLE other story) anyways I remember going to the ER like every two weeks and always following up with my doctor and no one could ever tell me any answers. About this time was the first time I heard about endometriosis. I was on pain killers one night and out to dinner with my then-in-laws and daniels mother asked me if I was sure it wasn't endo. She herself was a sufferer and thought that my sypmtoms sounded like this. Oh, no, they said it was just cysts and PID (a diagnosis I STILL get all the time when they are not sure why I am in pain.) Long story short I spent the next four years trying to find someone who would listen to me and believe that I was in pain. One ER visit during this time did reveal that I had Chlamydia. How, you may ask, because just because I was a pot-head in high school I was NOT a slut and had never been with anyone other than my husband. Lets just know. NOT a good day. And yet somehow I ended up being the one physically hurt. GOD he was an ass FAST FORWARD.....ZOOM

So I finally left him, met and married Dan, and here I am with an official diagnosis as of August, 2008. Before the lap in august I was in so much pain all the time that I remember for a month before I pretty much sat in my chair and was high on percocet the entire time. Not a good thing for a marriage that was only a few months old. So I get my diagnosis, and my doctor says get pregnant, and we want to have babies anyway, so I say yeah, lets get pregnant. Except she lied when she said it was no biggie. She told me it would happen easily and that there was no reason I shouldnt be pregant by Christmas. Merry Freakin Christmas, Sara, your doctor is a big fat liar.

So here I am. Sitting here at 1 in the morning writing all of this to people who, lets face it, have already heard all of this. I currently have a very large and painful cyst on my left ovary that despite having no ultrasound my doctor is sure has "gone away" even though I am not an idiot and I can FEEL the damn thing. I am seeing a doctor through the University of Iowa next week who I am hoping can give me some answers. So yeah, I hope he can.

So there is the story, in a nutshell. Later posts will prolly be more detailed and specific and probably just as boring, as my life revolves around this disease. If anything I hope that just getting it down on "paper" will help me to deal with all the things floating around in my head. So I hope you enjoy, and if you don't...oh well.....I don't either lol! LOVES!