When I was 13 I felt a new and scary pain that my young,
unsophisticated, and N*Sync obsessed brain couldn’t process. I just kept saying
to my Mom and the doctors that my “stomach” hurt. Of course they did lots of
tests and sent me to a gastroenterologist who decided to do a colonoscopy and
endoscopy… which is where they send a camera on a voyage to my tummy through,
um, both passage ways. They did the procedure at Mary Bridge Children’s
Hospital so they let me have my Mom in the procedure room until I was asleep.
Then in some morbid way of making me feel in control they let me inject the
anesthetic into my IV. I looked at my mom and said “oh, it feels…” then I
literally passed out. My Mom starting crying in her minimalist hysterical way
and the staff assured her every thing was fine and she went on her merry way.
Who knew that was just the beginning of being put to sleep like a friendly yet
aged golden retriever.
The next stop was a gynecologist who decided that I must
have severe endometriosis. So they decided to do a laparoscopy where they make
3 little incisions- 2 on the bikini line and one in my belly button, then they
go in and check out my girly innards. Turns out the kindly, intelligent doctor
was correct, I had severe endometriosis. Once again I will use my non-medical
and always quirky Deni’s Medical dictionary to define. Endometriosis is a
disease in which pesky, uninvited cells attach themselves to the ovaries walls
and flourish, wrecking havoc in their wake. (This is strange because I tend to
kill any plant I come in contact with but call me Farmer Deni when it comes to
growing painful rebellious cells!)
Around this time I started noticing pain with urination and
they schlepped me off to an urologist who also needed to put me under for
diagnosing purposes. So he performed a cystoscopy to check out my bladder up
close and personal. This one they went up my urethra with a camera… fortunately
I was asleep for that one as well…
Turns out… that Dr. was a chump so we moved on to greener pastures
and after shuffling around we finally found my beloved Dr. Karny Jacoby based
in North Seattle. She never doubted a word I
said and agreed with the chumpiness of the last urologist so she decided to do
another cystoscopy… this time she knew what she was looking for and diagnosed
me on the spot with interstitial cystitis.
So from this point on we had our mission… Treat Deni’s IC…
we just didn’t know how. After trying every non-invasive and relatively easy
treatment Dr. Jacoby decided to bring out the big guns and implant an interstim
device, which is a little pacemaker looking thing that is implanted in my lower
back with wires that stimulate my sacral nerves to help with incontinence,
frequency and urgency.
That step was a huge one that involved lots of little steps…
first they installed a temporary trial one that had a wire coming out of my
side and attached to a little external machine for a couple weeks. Then when I
decided I could live with it they went in and placed it in permanently along
with a matchbox sized battery pack. Each surgery they put me to sleep for the
slicing and dicing then wake me up so I can tell them where I feel the
stimulation. Usually they give me great drugs that make me forget it all but
unfortunately a couple times it hasn’t worked and I have been scarred
emotionally by what goes on in that OR when they think you’re asleep…
At first I thought the interstim may very well be the
ticket! It seemed to help a ton but those tiny wires (or leads as they’re
called) are placed so perfectly that my clumsy self tends to yank them out of
place frequently. So after that I had 4 revisions surgeries to put the little
leads back in their exact, perfect spot.
Then in 2008 I started having all sorts of extra pain and
went to my gynecologist again. (I was starting to get very familiar with the
common species of fish in waiting room aquariums by this point.) He decided to perform another laparoscopy to
check out my ovaries and laser off any more flourished growth that might have
crept its way back. This was the surgery that he diagnoses me with level 4 (out
of 5) endometriosis. I’m just saying… if this was the Olympic, I wouldn’t be
complaining about that score! USA,
USA, USA!
The year after that I decided to go for a nice innertube
ride behind the boat and knew instantly after hitting a wave I was in for
another surgery. This time when we went to break the bad news to Dr. Jacoby she
brought up the idea of going “bilateral” or in other words… getting a second
interstims. So we did another revision on my first one and she added the
temporary tail while she was in there. Then just like clock work, two weeks
later I was back in to get the permanent one installed.
I managed to keep them in check for 6 months until I was
sent back to my friends at the OR for a revision on my new interstim. Then just
a few months after that… I was back in for a double revision… which was NOT an
enjoyable experience having both sides operated on. I was forced to lay flat on
my face for a week until I could manage to lie on my side for a few minutes.
Just a few months after that surgery I found I was pregnant!
So my next surgery was a scheduled c-section because of all the perfectly tuned
wiring running through my body they didn’t think I should attempt labor. Then 2
months after I had my angel baby I was back in my home away from home to
reposition the interstims after my fat pregnant body and kicking fetus
destroyed their placements.
Just when you think you couldn’t take another surgery (tell
me about it) there is one more… Do to losing a bunch of weight after having Titus
and possibly doing too much too soon after the last surgery my faithful Dr. was
slicing me open and fixing me up once again!
Sheesh… so that’s it! My list of surgeries… More are
inevitable and my Dr told me that they even have new technology coming out that
would only require one battery so less incisions and therefore shorter
recovery, that’d be nice!
Also coming up is the dreaded hysterectomy that has been
leering since the day of my endometriosis diagnosis 12 years ago… I hope to pop out another baby before that
day but either way I know that my body will have more scars from incisions and
stubborn IV’s. I will probably have more foreign objects tossed in my body like
that junk drawer that you find your missing marbles in.
Surgery is always hard on me… the anticipation, the
surgeries when I’m forced awake to guide, every recovery, the narcotics after
surgery and the process of getting off those narcotics… and then as of the last
2 surgeries… the not being able to pick up my sweet baby boy or take care of
him or nurse him.
Every surgery I go in thinking “this is the one!” thanks to
all the support and motivation from my loved ones… and I go out thinking “this
better be the one, I’m never doing this again. If this isn’t it, heads are
going to roll!” I know if I stopped being positive I would break down… so I
know these surgeries are worth it and its all part of the IC game!
