Friday, February 28, 2014

What's Got Me Scared

I hate to use the word scared.  I hate admitting something frightens me.  It means a level of vulnerability that I try to deny I have.  I can admit when things make me nervous.  I can admit when I'm anxious.  But scared.  Scared is bigger.  Scared makes me feel like a little girl again.  A little girl in a big, mean world.

But I am scared.  I'm going to tell you why and it probably won't make sense to most of you.  But there will be a few who will totally get it.

I'm having intense pelvic pain again.  Last time it lasted almost two months.  So far this time, it's been a couple of weeks.  And it's been off and on in between those two major episodes.

Here's what I'm not afraid of.  I'm not afraid it's cancer.  It could be, but for some reason that's not really a fear I have.  I'm not afraid I'm going to die or anything.

I went to my doctor with this problem in October.  That's when I'd already been hurting for a month.  He did an exam, a pap smear, and ordered an ultrasound.  When nothing showed he suggested that I see a gynecologist.

I know it's possible that it's something non-female-problem related.  It could be intestinal.  Let me tell you why I don't think it is.  It feels like I have a rock in place of my uterus.

As a woman, I went years and years without being aware of my uterus or being able to feel it inside me unless I was cramping during my period.  I mean, how often are you aware of your pancreas or your liver?  Can you feel them?  Would you know if they hurt?  So I understand when my husband says, "How do you know it's your uterus?"  And, seriously, sometimes intestinal cramping and uterine cramping feel a lot alike.

But after going through labor, my awareness of my uterus increased quite a bit.  I remember when it tightened and felt like a boulder inside me.  And this feels kind of like that.  On a much smaller scale, of course.

And then there are the twinges in my ovaries.  Again, how can I know that's what's twinging?  Well, let me tell you.  If you've ever been to the doctor and said you think your ovaries are hurting this is what he/she will do.  He (because my doctor is a he) will have you lie down and will palpate (which means push around on) your abdomen.  And when he pushes in a certain spot and you practically jump off the table and he says, "Yep.  It's your ovary." then you remember that.  From then on, when it hurts, you know what's hurting.

And, yes, at my exam he palpated my abdomen and confirmed that it was my uterus and ovaries that were hurting.  (And let me just tell you, they hurt a lot worse for a while after someone pushes on them repeatedly.)

So I'm not completely ruling out something else, but I'm pretty sure it's my internal girl parts that are causing me so much pain.

My primary care physician thinks it's probably endometriosis.

Well, you know what happens when a doctor tells you they think you have such and such.  You start researching such and such until you see the specialist.

Endometriosis isn't something incredibly dangerous.  It won't kill me.  The worst side effects are pain and infertility.  And since I'm done using my fertility I don't mind if that goes away.  And I already have the pain.

So why am I scared?

I am scared because I read up on how they treat and diagnose it.  Often they use hormones to reduce the symptoms.  Well, I am incredibly sensitive to hormonal changes of any kind.  I've had PMS since my first menstrual cycle at fourteen.  I've been on birth control pills a few times in my life and had horrible results.  They either make me homicidal or suicidal or a bit of both.  Having just come through a nasty mental prison, I'm not anxious to go back there.  One of the treatments if they do find endometriosis and it's severe is a complete hysterectomy. 

Again, I'm done with those parts so I wouldn't mind giving them up.  Except for the whole hormone thing.  It's called surgical menopause because the surgery instantly does what is supposed to take a woman's body years to complete.  If small hormonal changes like my natural cycle and birth control pills can send me out of whack, just think about what surgical menopause could do.  And it's not like we can change our minds afterward and say, "This isn't working.  Let's put it all back."

So there are those issues.  But still those aren't my biggest fears.

My biggest fears are these:  sedation and no answers. 

The only way to confirm endometriosis is through surgery.  Laparoscopic these days, but still full sedation.  The surgery doesn't scare me.  Being put under terrifies me.  Not for the typical, "What if I don't wake up?" reason.  Sedation terrifies me because I will have no control over what is done to my body.  I have a history of sexual assault.  Things were done to my body without my permission.  At least once it happened when I was asleep.  This is when I became a light sleeper.  Being aware of and in control of what happens to my body is very important to me.  It's not that I don't trust the medical personnel.  They have no reason to hurt me.  But giving up that control just doesn't feel safe to me at all.  It terrifies me.

And I fear that after all of the tests and possible surgery, they won't find evidence of anything wrong with me.  It will be another time that we've spent lots of money and caused lots of worry for nothing.  Another time that the people around me wonder if I'm faking it.  If I'm just a big baby.  Another time when I doubt myself and wonder if everything really is all in my head.  Another time I hurt so badly but can't say why.  Another time of feeling embarrassed because I'm such an idiot who can't handle a few of the twinges that are normal in life.

But I can't just not get it checked.  Because it could be something else.  It could be something serious.  I can't take that chance.

I see the gynecologist on Monday.  Your prayers and happy thoughts are welcome.  Again.


Rubye Jack said...

I relate to the sedation thing. But of course I relate to most things you talk about. My doctors are always wanting to do routine tests that include sedation like Versed and I always refuse regardless of knowing how necessary the procedure may be. I don't want to lose control.
I believe emotional stuff affects us physically. There are times when my kidneys ache so badly and it stings to go and I run a fever, only to find my labs indicate nothing but healthiness. So what can you do but go through with the procedure and hope for the best. Because indeed, it may be something.

One thing I'd like to share with you Robin is that after menopause I began to become healthier emotionally and no doctor has told me this, but I firmly believe I had too much estrogen or else an intolerance for estrogen. I had none of the symptoms many women do with menopause and actually started getting better afterwards.

Bonnie said...

You got it.

EstheticGoddess said...

Prayers coming your way. Also do a little research on the supplement Evening Primrose Oil. This stuff stopped my lady parts from hurting. I still take it!

suzanne said...

Big hugs to you. Sedation is scary for anyone, and I can't even imagine adding your trauma into the mix. You're very strong to even be considering this (although of course you should - ignoring symptoms is never a good idea).
Also, are you paying for all of this out-of-pocket? I'm Canadian, so all these sorts of tests and surgeries are covered for us. Is this adding financial strain on top of everything else? Because that has to make it doubly stressful. Hang in there.

eve said...

Hey, just found your blog by accident, but since you wrote about endo, I wanted to take the fear out of it a bit :)

My endo has been confirmed 5 years ago, looking back I've had it since I was 18, so 10 years now. I remember I cried when my doctor told me after the surgery that I had endo. Not because I was sad or scared, but because I was so happy, that finally someone could give me a diagnosis that made sense.

Since then I've been operated on again, I kept my ovaries, my uterus, my fertility. Every couple of years it gets really really bad and I have to undergo surgery. My doctor then removes the endo clusters without hurting my organs. I could have my uterus removed, but there is no guarantee, that this will stop the endo from growing.

Also, I have a hormonal coil in my uterus. This is great because the hormones stay in your uterus and don't make you go crazy like other hormonal contraceptions. Also they only have one kind of hormone in it which makes the whole thing not so evil. I still get pains and my endo still grows, but the pain is manageable.

I really hope you will get better and I won't wish endometriosis on you, but if it turns out to be it: You can live with it, without intense hormonal treatment, without having your organs cut out. There will be pain and it will suck, but there are ways to deal with it. I do lots of yoga, because it strengthens my belly and helps me relax. Also bellyrubs by your significant other should help a lot :) And warm baths help me too. Basically everything you do when you have menstrual cramps.

Okay, sorry for the long rambling, I hope it helped a bit, or at least gave you some insight. If you need any further info, just give me a shout :)