Saturday, May 3, 2014

Health Update -- Not for the Faint of Heart

I will try to keep this clean, but my story may still make some a bit squeamish.

First, the basics.  I had my annual physical a few weeks ago.  Everything seems okay.  We didn't do blood work yet because I've switched thyroid meds and we'll need to do blood work for that in a couple of months anyway.  In order to spare me a poke, we're doing it all then.

I wanted his feedback on my thoughts about how to proceed regarding my prolapsed uterus.  I wanted to give him my full medical history (since this is my first full physical with this new doctor).  I wanted to give him an overview of my current symptoms, not looking to fix anything but just to give him a whole picture and see if anything worried him.  And I wanted to switch thyroid meds from a synthetic to a natural.

Doctors prefer the synthetic for more accurate dosing control, so it's not always easy to get one to switch you when your numbers are good.  My thyroid numbers have been good for a couple of years, but I still feel horrible.  My gut told me I needed to try something new.  He was a bit reluctant but said if I felt really strongly about it he would be willing to give it a try.  I've been on the new medication for about two and a half weeks.  I don't want to jinx anything, but I have been feeling a bit better on the energy front.  Not great.  And no where near how I used to feel.  But I have been able to do a bunch of work around the house - spring cleaning - that I had wanted to do for a long time but just couldn't make myself do because I was so exhausted.  Any improvement on the energy front is wonderful, so I'll gladly take these baby steps with joy.

After hearing my full medical history (including a headache for eight and a half years) and seeing my list of symptoms he suggested another MRI.  It's been about eight years since I had one and my symptoms certainly warrant it.  I told him I want to wait until we try the new meds for a while and after I have surgery and let my body adjust a bit.  If things are still the same I'll have the MRI then.  Besides, we have a one year waiting period for pre-existing conditions that will end in September.  Perfect timing.

I told him about my uterine prolapse diagnosis from the gynecologist and said that after all my research I wanted to have a complete hysterectomy, including ovaries.  He understood my reasoning and said he would back that decision.  He said I wouldn't have trouble convincing the surgeon to do the hysterectomy but might have trouble with the ovaries. But he also said when I mention two second-degree relatives with cancer (my grandma died of ovarian cancer and my aunt died of breast cancer) he was pretty sure I could persuade him.

I go back in two months for those blood tests.  I promised to have a mammogram at the end of the year.  We're good to go there.  That part was easy.  But then I had my surgical consult.  Ugh.  That wasn't so easy.

Sorry to make this so long, but I want to keep this all one post.

My husband came with me.  I told him he didn't have to, but he wanted to.  In the end I was very glad he did.

We start with the basic preliminary stuff, weight, blood pressure, etc.  The doctor comes in and asks lots of questions about my discomfort and pain.  Does this activity hurt?  Does this one?  What about when you do this?  So many questions about things I hadn't ever thought of.  So far so good.

Now, I'll step out, you take off everything from the waist down, cover with the drape, and we'll do an exam.

I'm sure there are women who don't hate pelvic exams.  I'm even sure there are some who get off on it.  But for most women a pelvic exam is something we know we have to do and we just try to endure.  Just get it done quick.  Honestly, trying to be elsewhere mentally as it's happening.

A regular pelvic exam isn't usually painful.  At least for me it isn't.  Uncomfortable, to be sure.  But not painful.  This wasn't a regular pelvic exam.

This exam was more extensive (my husband later said something to the effect of the doctor being in up to his elbows).  Instead of the typical two or three minutes of poking and swabbing, it was ten or fifteen minutes of pushing and reaching and pressing internally and externally.  (There was a nurse in the room that I paid no attention to.  My husband said he looked over at her during the exam and she was squirming and looked uncomfortable and pained just watching it.)  It hurt.  A lot.  And everyone in that room knew it was hurting me a lot, even if I tried to be still and wait it out.  The doctor even apologized a couple of times when I jumped.  It wasn't too long after it started that my pain became evident and my husband came and stood beside me and held my hand.  I'm so grateful for that; it helped get me through.

Eventually the doctor had all the information he needed from the exam.  He said he would step out, I could get dressed, and then he'd come back and talk to me.

He left.  I got dressed while standing on very weakened legs.  And I cried.  It hurt so much.  More than anything but labor.  It just hurt so much.

He came in.  We talked.  He did quickly agree to the hysterectomy and balk at the ovaries.  He told me all the reasons the medical community would suggest I keep them.  I told him I'd done my research and gave him my reasons for getting rid of them.  He said he would back that decision.  He said he couldn't guarantee that the surgery would relieve my pain.  Even after all the exams it's possible my pain isn't coming from my uterus and ovaries.  But he also said women tend to have a very good sense about this and it's best to trust them on it.  (That earned him a lot of points with me.)  He said my uterine prolapse isn't as bad as the lady who examined me before had said, but it can vary from day to day depending on how much I've been on my feet.  But he also said that with the amount of pain I've had and since I'd tried pain medications and hormone treatments already with no success, even without the uterine prolapse a hysterectomy might be advised.

I need to have a bladder test to see if I am a candidate for a bladder sling (you'll have to look that up; this is too long already).  Then we will schedule my surgery.  I will have a complete hysterectomy including ovaries.  It will be performed laparoscopically (with robot assistance) and delivered vaginally.  The recovery is two to six weeks (small stuff at two weeks, full activity at six).  I will stay one night in the hospital.

The day of and day after the exam, my pain was excruciating.  So bad I had trouble walking and was brought to tears more than once.  My pain used to come and go, but I am hurting all the time now.  I am cancelling a lot of plans because I hurt too much.  I am taking pain pills to get through the most important things (like my daughter's college graduation, yay!), but then I pay a price the next day.  Rebound headache from over-the-counter pain meds is tough.  Rebound headache from prescription pain meds is awful.  So I have to be very selective about what I take and when. 

I've missed most of my son's track season.  I missed the big party for the neighborhood's seventieth birthday that I'd been anticipating for months.  I missed my friend's fiftieth birthday party.  And so many other things I wanted to attend.  I'm just so ready for this to be over.

I understand things could be tough after surgery.  I know my body will go through a shock and might not adjust well to the lack of hormones.  I know I will hurt a lot as I recover from the surgery.  But I am so ready to trade the pain and problems I have now for the ones I may have in the future.  I'm just so ready to feel like I'm on the road to recovery.

10 comments:

karen said...

you've suffered so loing and gone through so much. I am so sorry for everything ((HUGS)) praying your pain ends soon and things start looking up.

Nan @ Granny Fabulosa said...

I'm sorry to hear about the pain and difficulty you are going through. I hope the surgery is successful and soon!

Lydia Filgueras said...

I hope you find some relief after your hysterectomy. You'll have to deal with early menopause, but it sounds like you're prepared for that. Best wishes.

Mothering From Scratch said...

Robin, I have chronic autoimmune issues and so I totally understand your weariness. I've been down so many rabbit trails over the years trying to feel better. I also take natural thyroid meds … Armour. I've usually had no issues with it. A few times it's been a little hard to get my dosing right. My doctor would much rather have me on Synthroid, but I wont' do it. So I'm glad you pushed for that.

Praying for you right now, friend! I want you to continue down that path of recovery!

Katy said...

I hope they HURRY! You are one tough cookie but enough of the enduring already, right???

Jennifer @Making Our Life Matter said...

Sorry you are going through so much pain. Here's to them getting it done quickly, and you feeling better soon!

Homemakersdaily.com said...

Glad relief is coming. Hope is worth a lot.

Kim M said...

I am so sorry that you have to endure this and I hope that the surgery will offer you some relief...and soon!

Melissa G. said...

I'm so sorry you're in pain. I know this has been a long road for you. It at least seems like you have a plan and doctors who are willing to hear you out.

lunanista said...

I'm sorry for your pain. As a fellow traveler on the pain path, may I recommend the book Managing Pain Before It Manages You by Dr. Margaret Caudill. I have the great good fortune to work with a fabulous neuropsychologist for pain management and she and I have worked through this book together. I am beginning to be able to participate again in the lives of my family and friends and that is such a great blessing. May you be at ease.