Sisters and Other Strangers

The past few days, since I had a fight with my sister over this blog, I have been thinking more and more about what it means to be the sibling who is sick.  My friend Sonja and I have talked about it-she has two brothers who will probably one day start a family of their own.  Watching siblings starting their own families can be torture on the infertile/barren/sick.

The first thing that I heard after I woke up from my hysterectomy was that my sister had given birth to a boy.  I had been saying for months that I just knew she was going to go into labor while I was in surgery, and everyone kept saying that I was being stupid.  Bigger than life-before I walked back to the delivery room, my mother got a text saying it would be soon.  When I woke up, broken and gutted-I asked my husband if everything was ok.  He said yes.  I asked about my sister.  He said "we have a nephew."

When my parents got back to see me (after driving 45 minutes to see her), the very first thing that was said was "do you want to see a picture of your nephew?"

Not really, mother, but ok, I will pretend to be happy at this moment.


Don't get me wrong, eventually I was happy, but mostly I just wanted to feel my own loss for just a few moments.

My siblings will have families.  I hope for nothing more than for M's children to grow happy and healthy, and I hope nothing more than for N to one day be able to legally marry a woman she loves and start a family of her own.  That all being said, I will still always be the sick one.  I will always be the one trying desperately to get them to understand-and always failing.

Once, after another large fight with M, I actually convinced her and my mother to sit down and talk about Endometriosis, PCOS, and Adenomyosis.  I brought all my books and research and journals and all kinds of things.  A whole bag full of information that I had been trying to share with them for months-and now I was finally going to get to.  M proceeded to tell me that (another M), our cousin, who also has endo, was able to get through school and work full time-therefore I must be faking or something.  She would not even try to hear me when I told her that this disease effects every single woman differently.  She refused to listen-refused to see things for what they were-and left in a huff.  My mother kept the books and info and read them, and for that I am thankful.  There were things that she didn't know-and at least she made an effort.

Then after this, when we had a family event in ND, we stopped in Fargo for the night, which was uber cool, because it meant that I was going to get to finally meet one of my best friends, Sonja.  My mother and M were sharing the room with me, and expressed interest in meeting her to.  Sonja and I went up to the room, and M said, and I quote, the following to her...

"I just want to say thank you so much for being there for Sara because I know how much she needs it and I know how much it helps her to have you there for her."


Um.

What?

M's big thing is that my online friends and blog friends who have endo all feed me.  I feed them.  We "feed off each other."  She says this often.  But when she is actually faced with another human being who suffers like I do?  Oh well then its all "I understand" and "thanks for the support."

Hypocrisy.

The whole thing is-I can't change it.  I can't make her see me for who I am, and I can't make her grow up.  But I can try.  I can try to get her to see who I am and what I am-and I suppose if she never gets it, then thats her loss.  Because lets face it-I am pretty damn cool.

To "Stop Trying"

I have been thinking lots about all the ways that Dan and I tried to have a child.  All the ways and times we tried to conceive our child biologically.  Then came the hyst.  Yes, I asked for it, and yes, we both looked forward to it.  But I have just recently begun to see it for another thing that it was.  It was not just a radical treatment for the Endometriosis, it was not just another diagnosis, the Adenomyosis.  In a way it was the point that ever couple on this journey must somehow reach.  It was our decision to stop.  To stop trying.  To end fertility treatments.  To officially look for another way.

I am by no means saying that we tried everything we could have.  Money and pain were the biggest things stopping us from continuing the journey.  If I hadn't been in so much pain all the time, we would have saved the money and tried an IVF cycle or another IUI or SOMETHING.  But I couldn't do anymore.  WE couldn't do it anymore.  I was literally living on Percocet, while on the couch feeling sorry for myself.  There just was nothing else to do.

I know there are women out there that have tried these treatments numerous times without results.  I am by no means saying that my choice was any harder or easier than theirs.  It was just different.  It came to us in a different way, in a different form.  The mindset that all of us infertile people are the same is something that has been explored before on other blogs, and I must say that lumping us all together into one big basket with the black I pasted on the side is just as unfair as looking at a group of people with AIDS or cancer and saying that they are all the same, and have been on the same journey, and reach their choices the same way.  We are all unique, and we are all on relatively the same journey, but we are individuals.  One of the things that we all have in common though is that every couple, no matter if the end comes with a child or a choice to stop, has to reach that point of "enough is enough."  Every couple has to stop at some point.  Sometimes it is chosen by the couple, in a situation where they feel they have tried everything they can do.  And sometimes it comes in the form of a medical condition, like with us, where I needed the hysterectomy to survive.

I am not saying that keeping my uterus and ovaries would have literally killed me.  I could have lived with them still inside me.  I could have continued to breathe while sitting on that couch or lying in bed for the rest of my life; but how would that have been any different from someone leaving me in a coma with no function for the rest of my life?  I see it the same.  So I had to have it.  I had to lose those things to find me again.  But it was also our choice to stop trying.  It was also that point that everyone on this journey eventually reaches...that point when they are done.

It's an odd feeling.  I am no longer TTC.  We are no longer trying.  I no longer have a use for the very expensive ovulation predictor or pregnancy tests or even the big bottle of folic acid (other than the obvious staying healthy on this new journey).

In a way I feel robbed.  I didn't get to sit down with my husband and have that long talk about what to do next.  I did get to sit down with him and talk about how we were going to deal with the loss of my organs, but I didn't really get the choice of "stop and pursue adoption or continue trying."  That important choice was made for me, made by my stupid body that never really worked the way it was supposed to work.

I don't regret the hyst.  Well, I don't regret it right now!  I go through regret times and happy times, and I think thats normal.  I think that if I didn't think about my loss AND think about my gains in equal form right now, this soon after, I would either be crazy or on drugs, and I am pretty sure I am neither.

Mostly I just want to let everyone out there know, in case it isn't obvious.

Dan and I are no longer trying to get pregnant.  We are exploring other options.  I will never be pregnant.


(BIG duh....but I still strangely feel the need to have that moment that others get.  That moment where they share their choice to stop with the world.)

“Although we've come to the end of the road, still I can't let you go, it's unnatural, you belong to me, I belong to you .”

One more "little death"

I read once about the "little deaths" that infertility brings every month. The familiar wetness between your legs that brings with it the red of death...the death of your chance to conceive that month. Even though I know that the chances are so low they are almost not even there...there is still that one little part of me that thinks maybe this time will be the time.

I started birth control pills this last month. Even though I knew the white pills were coming they still caught me by surprise. Last night I took the first one, and today the pain came just like every other time, and tonight...my little death.

Is it still a death when I know that that stupid pill makes it even more impossible? Is it still something to mourn when there was never anything there to begin with? Even though I know through months of therapy and talking with friends that I have every right to feel this way...I still feel guilty.

I feel guilty that I have all these things to be thankful for and yet all I can think about is everything I don't have. I feel guilty because the only thing I could ever want for Christmas no one can ever give to me, and I hate that. I feel guilty that I can't look at myself in the mirror and see who I am and not some broken woman. I feel guilty that I can't make love to my husband and enjoy it because all I can think about is how nothing will come of it but one simple moment of pleasure. Thats almost the worst of all...because I know he deserves something better than that.

I am on these magic pills that are supposed to make everything better. I always said that I would never go on anti-depressants again and yet here I am taking the little blue pill they keep increasing the dosage of in some attempt to make it work better. Right next to those stupid birth control pills. And the pain pills. And the anxiety pills. And the nausea pills. And the pills pills pills. Why is it that these little things are supposed to make everything ok? Nothing is getting any more ok than it was before the pills, so why still take them? Why still pretend that tere is some end to this feeling inside, and these stupid things are going to help me get there?

I know I shouldn't complain so much. I know that the doctors are trying to come up with the "right" dosage and all that crap...but its been months! When am I going to start feeling better? When am I going to be able to look at all the good things in my life and not just the bad. I am about to move out of this basement and into our own apartment. Dan just got a great job, and things are finally starting to look up. And all I can think is broken.

Broken.

Broken.

Broken.

Its not just my womb anymore. Its not just my useless body now. Its me. I, me, myself...WHO I AM....is broken.

So what is the little death? Is it the fact that another month has gone by without the blessing I pray for daily? Or is it me? Am I just a series of little deaths? When will they stop? When will I be a life again?

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 now...how 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.

AS PROMISED!!!!!

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.

Causes

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.

Diagnosis

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

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.

Prognosis

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.

*source-wikepedia.com*

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 yeah...here 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 dose.....now 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.