My Hysterectomy Experience to treat HPV
On February 13, 2008 I had a total vaginal hysterectomy to treat my re-occurring abnormal PAP smears due to High Risk HPV. Click here to can read my full story and thoughts on the battle with HPV. I relay my experience here to hopefully help others who are considering this procedure.
My History & Decision Making Process
Back in April 2003, I was diagnosed with my first abnormal PAP smear
(LGSIL, confirmed with CIN-1 on biopsy) due to high risk HPV at age 29.
I went deep with research, and took a good amount of control over my
medical care and decisions. I was sure that I could defeat this thing
with a good diet, supplements and some traditional chinese herbs. After
a year, I started to notice spotting after intercourse, and went in for
a second biopsy which revealed my dysplasia had progressed to
CIN-2/moderate. I relented and opted for a LEEP procedure. Since my gyn
only does the procedure at the surgery center, I had him do a
laparoscopic tubal ligation at the same time - as I had long ago made
the decision to be childfree by choice.
I had actually inquired about the possibility of a hysterectomy to treat
it, and my gyn was supportive of the idea but was pretty confident I
could not get my insurance to pay for it without trying a LEEP first.
For almost 3 years after I had both normal PAP smears and negative HPV
results, I truly thought HPV was a thing of my past.
Then in May 2007 during my routine exam, I had another low-grade
abnormal PAP smear. Knowing the routine and what to expect, I put off a
biopsy until I returned from a
7-month road trip across the country in my small solar powered
teardrop trailer (it was an amazing adventure). I went to
Burning Man, and asked the playa for healing
from HPV.
When I returned to my home in Florida in December, my PAP was still
showing abnormal and I went back to my previous gyn for a colposcopy/biopsy
which revealed CIN-2 again. My gyn recommended another LEEP (under
general anesthesia again). I brought up the idea of a hysterectomy, and
he was quite receptive to the idea and said it was a reasonable path to
take. But he still recommended a LEEP first to rule out cancer. I talked
with him further, and got him to agree to doing the LEEP as a frozen
section STAT biopsy to confirm the absence of cancer while I was still
under, and then to proceed to a hysterectomy if it was all clear. If it
wasn't, then he had my permission to wake me up and refer me to a gyn
oncologist.
My doctor also did not think that a vaginal approach would be possible,
as I had not had kids and would probably not be stretchy enough for him
to perform the surgery - so an abdominal approach was likely.
My partner and I took my choices home - another LEEP or an abdominal
hysterectomy. I gave myself a week to make a decision.
We researched. We considered our current life situation. We considered
the future impacts of each. We considered as many angles as possible,
and I wrote about them in
this blog posting
to invite feedback from friends. It was a decision that was difficult to
make, considering I've never had any other gyn problems. My periods were
light and pretty much non-events. I have no history of endometriosis,
fibroids or any other conditions that so many of my females friends have
had. I was considering this only to deal with HPV and a condition that I
wouldn't know I had if it weren't for looking at my tissue under a
microscope, which brings about its own set of emotions with dealing with
a very common STD that so many people dismiss as not being worth
worrying about.
And in the end, the hysterectomy was a clear choice to me. But my
research had shown me that a vaginal hysterectomy actually probably was
feasible, so I talked with many of my doctor friends on the best way to
approach my gyn with this information without insulting him.
I actually made the choice over a beer
that carries the same name as my gyn (which he got a chuckle out of.)
Pre-Op
When I gave my answer to my gyn, he decided to do an internal exam to
see if a vaginal was possible - even without me bringing it up. I was
thrilled.
He poked around, examined me.. made note that my uterus felt 'slightly
enlarged' but even so I was a good candidate for trying a TVH. He could
always convert to a TAH if he felt it necessary. We also opted to keep
my ovaries as there was no indication of problems with them, or any
family history of ovarian cancer. But I gave him permission to remove
them if they looked even a bit unhealthy when he got inside.
I waited a few days for the call from the gyn's office to set the
surgery date. At first, she offered a date almost two months away, which
disappointed me (I'm the type that once I've made a decision, I'm ready
now!). She then realized she was looking at the wrong month and then
offered a date less than 3 weeks away. It was likely sooner than I was
anticipating, but I took it.
I had only 3 weeks to really feel the emotions of it, and prepare my
life for possibly 6 weeks down. I had good days and bad days. I would be
doing just fine, and then suddenly walk into a wall of emotions of being
scared, angry and such.
My partner was extremely supportive.. he was with me every step of the
way. Offering an ear to rant to, a shoulder to cry on. He expressed his
own worries and fears, and reassured me of how much he loves me and
wasn't going to let me go through any of this alone, and how he wished
he could hold my hand even during the surgery. My closest friends came
to my side, and gave me ample space and opportunity to talk things out.
I even started a blog on a select filter for my friends who were open to
letting me have 'me space' to express my journey. It gave me an outlet
to let out all of my fears and anger, and it really helped.
Other things I did included asking a pro-level photographer friend of
mine to do a nude photo shoot with me to capture my pre-op body,
especially if a TAH was a possibility. We made some beautiful art
together from that photo shoot, and it was incredibly liberating to do
(and no, don't ask for copies of the pictures). I also took a digital
copy of the surgery pictures from the laproscopic tubal ligation and
photoshopped out my uterus (imagine cutting out an ex from old
vacation photos) to give myself very real visualization. This helped me,
and made some of my friends fall out of their chairs in laughter. Humor
is an amazing emotion.
The Night Before Surgery
The day of surgery, my partner and I decided to take a visit to the
Kennedy Space Center (we live just a few miles away). That was likely my
most emotional day, I was sick to my stomach with anticipation.. and
despite my doctor not ordering bowel preps, my bowels seemed to want to
completely empty anyway. I also had my last period end that day. I was a
nervous wreck, and could barely function.
And then, somewhere around 7 or 8pm that evening, a calmness overtook
me. It's like that wonderful calm after a storm, a peacefulness of
knowing you are a survivor and you will excel.
I slept peacefully that night, awaking at 4am to start the journey to
the hospital for my 7:30a surgery time.
A thunderstorm and the arms of my love cradled me as I slept.
The day of Surgery
When we went out to the car, the storm had passed and the sky was clear.
Stars twinkled down on us. It was a beautiful moment.
We got to the hospital. I was surprised with how un-nervous I was. I was
ready. I had let myself feel the emotions. Everyone was so friendly to
me at the hospital - from the folks who checked in me, to my pre-op
nurse. My love and my parents sat by my side as they prepped me for
surgery. Blood pressure checks, IVs, going over my medical history a
million times. And my pre-op nurse was a hoot, we laughed and told
stories.
After my gyn came to see me and my family and go over things one last
time.. they injected the Versed into my IV. I don't remember too much
after this, but my family tells me I was delightful and witty. Versed is
good stuff. I had pre-programmed myself to try to consciously remember a
few events despite the versed - and those memorable moments were:
- Kissing my love as I was wheeled away
- Being rolled into the OR room, I took note of the room itself
- Telling my surgery staff how much I appreciated them all
- Waking up to hear my doctor tell me how things went
When I woke up in the recovery (which seemed like the blink of an eye),
my gyn was holding my hand and told me how well things had went. I had
been under 1.5 hours, no signs of cancer, and the TVH went smoothly.
Best case scenario. I was thrilled.
I was wheeled into my room, which I was delighted to find out it was
both a private room and that my love was already waiting there for me.
They showed me how to operate the pain pump, and my nurse and CNA were
amazingly helpful and friendly. I started nibbling on crackers and such,
pumped my pain button a couple times and was generally in and out for
most of the afternoon.
In the evening, I had several visitors - family and friends. It was
delightful to see everyone. My love stayed with me at the hospital until
around midnight, and then came back around 6am - Valentines morning.
Post-Op
In the morning, my nurse removed my catheter and my IV was unhooked,
which meant no more pain pump. They switched me percoset, which worked
quite well on me. I was up walking the halls in no time and peeing on my
own without any difficulty. My gyn stopped by at lunch time and was
amazed with how well I was doing - and told me that my surgery went so
much easier than he was anticipating. My uterus was really small (I
thank having just had my period), and it slipped right on out. And he
said there was hardly any bleeding during surgery, and hadn't had a drop
post-op either. He released me to go home.
The discharge nurse read me my orders, and it took me a moment to
realize that I misheard her when she said 'light housework' as
'lighthouse work' - which are two entirely different things.
The most painful part was the wheelchair ride to the car - the
transportation technician thought there was a race or something. The
ride home was uncomfortable, we stopped by the pharmacy to pick up my
script for pain pills and then it was in bed for me.
I slept for pretty much 36 hours straight with just brief awake moments
for food, drugs, visitors and using the bathroom.
I took myself off the percoset and switched to Advil 2-days post op. The
pain was really quite absent, I was just feeling tender. My bowels were
moving smoothly. By day 5, I was no longer even needing the Advil. I was
walking up to a mile a day at a slow pace, and generally doing regular
stuff. I was even back to working part time hours (I work from home
doing computer stuff) by the first week.
All and all, I'd say recovery has been a breeze. There are stretches of
time where I completely forget I had major surgery, and I'm only 5 weeks
post-op at this point. I have to consciously hold myself back to not
over do it. I had pretty constant low grade fatigue for the first
several weeks, which has mostly lifted by now. And I do hit walls of
exhaustion. I force myself to lay down for a couple hours every day
(usually watching 'Buffy the Vampire Slayer' on DVD that a friend loaned
me) just to get the extra rest my body needs.
Body Changes
Some of the body changes that I've noticed so far include:
-
I do have a bit of 'swelly belly' - which is swelling around the belly from the recovery process. It's not huge or anything, but I definitely notice a bit more pooch. Apparently, in time, it will go down back to normal.
-
My sexual response is different, but not negative. I'd say all and all, my clitoral orgasms are as strong, if not stronger than before. Even with the noticeable lack of uterine contractions. I've not experience enough intercourse yet post-op (I was cleared at week 5) to make comment - it's slow going so far. Enjoyable, but tender and having to be very conscious. I do notice the lack of internal organ movement during trusts .. as if someone removed my cervix and uterus... oh wait. But it's good to be back to sex :)
-
My eye sight seems to be better. I've heard a couple other ladies comment on this, but usually they had their ovaries removed. It's odd. Not like I had bad eye sight (I previously had 20/20 with a stigmatism) and wore classes to correct the stigmatism that brought me down to a crisp 20/15. I find myself going days without my classes and not noticing a difference. Odd.
Other things that haven't changed that I was curious if they would:
-
I'm not lacking in natural lubrication at all, I seem to produce the same amount as before and not needing to supplement.
-
My vaginal taste and smell is as lovely as ever, I was concerned how the cervix and uterus might have contributed to that.
An unexpected feeling I've had is
feeling more whole, as a woman without a uterus. I've pretty much always
known I didn't want children of my own, but being a woman who doesn't
even have the parts to create them just feels so right to me. I feel
like I'm now so much more in the body I was meant to be in.
