Hello, there. I’m
back. How are you?
Things have been busy here in the land of Sweet Tea . As I said in my last post, there were some
things going on that were simply taking every bit of my energy and focus. Things have settled down some now. Actually, they’ve been somewhat settled for a
while now.
I’ve just been struggling with how to come back to blogging;
what to tell you, how much to share, etc.
You see, to tell you the whole story will involve getting really
personal for me, more than I have before.
I wasn’t sure about doing that. I
really thought about posting something along the lines of “had a health scare,
it’s mostly okay now, so glad to be back”.
And that is the truth, of sorts.
It’s just not the complete truth.
You see, the complete truth has been building for over a
decade. I just didn’t know it. So, after a very long internal struggle, I
have decided to tell you the whole, complete story. I wish someone else had some time over the
past twelve years or so, because I might not be writing this if I knew then
what I know now.
I apologize in advance if some of what I’m sharing crosses
the line for any of you. Like I said, I
really struggled with this post (I’ve been drafting it in my head for weeks
now), but I feel that the need to know outweighs the need to keep it clean and
pretty.
I was diagnosed with hepatic adenomas last month. For those of you who are as blissfully
ignorant as I was two months ago, they are benign liver tumors. I have nine of them. You can read more about them here or here if you’re
so inclined. A Google search will also
yield some interesting reading. I’m
sure at this point, you’re saying, “Oh, they’re benign, what’s the big
deal?”
There are a lot of things that make them a big deal, so here
goes:
First and foremost (and the part that makes me really angry,
and feel like I need to share my experience) is the fact that they were almost
certainly caused by years of taking oral contraceptives (birth control pills)
and I was NEVER informed that this was a risk.
I began taking birth control pills right around my 18th
birthday. I wasn’t using them for birth
control at that time. During the ten
plus years I took them, they were for birth control for roughly two and a half
years. I initially went on them to
control very heavy menstrual bleeding, and they worked reasonably well. I would be given a prescription that would
work for a while, and then the bleeding would get really bad again and they’d
change my prescription, usually to a higher dose of estrogen.
I saw four different gynecologists during this time, and
they all took a similar approach. None
of them looked into the cause of the bleeding much, or suggested any
alternative remedies. I read all of the
inserts that came with the pills and mentioned the risks: increased risk of
breast cancer, blood clots, stroke, etc, and talked about these risks being
increased for women who smoked, had high blood pressure, or were over 35. I didn’t have any of those risk factors: I’m a non-smoker, I don’t have a family
history of breast cancer, and my blood pressure tends to run a little low. Even an imminent needle stick doesn’t get me
more than a point or two over what they tell me is ideal. I thought things were good. I kept up with my yearly appointments, I read
all of the inserts that came with the medications, and the doctors kept
prescribing them.
Then things changed; the bleeding became worse than it had
ever been earlier this year, to the point that I had to leave work a few times
because of it. I got an appointment with
the gynecologist who finally decided to do an ultrasound. At that time it was determined that the high
estrogen content in the pills (they had continually upped the dosage over the
years) was actually contributing to the problem, and I was put on a totally
different group of hormones. Once again,
I thought everything was good.
I had been to my regular doctor in the midst of all of this
for a lingering cough, and I mentioned to him about the bleeding, and that I
had an appointment set up with the gynecologist. He said that if the gynecologist didn’t do
blood work he wanted me to come back to his office to have some done to check
for anemia, thyroid issues, etc.
The gynecologist never mentioned blood work, just sent me on
my way with a new prescription, so I went back to the family doctor for a blood
draw. I didn’t think much about it after
they drew the blood. My numbers have
always been good. I once had mildly
elevated liver enzymes, but the doctor I was seeing at the time attributed that
to my being heavy and having had my gallbladder removed.
So I was a little surprised when my doctor’s office called
and said that I had elevated enzymes, and that they wanted to send me for an
abdominal ultrasound.
I went for the ultrasound and was told there was something
there that they needed a clearer picture of, so was then sent for a CT
Scan. The CT Scan revealed that there
was definitely something there, but they still couldn’t tell what. The next step was an MRI. The MRI revealed nine masses of some sort,
but they still couldn’t tell what.
I was then scheduled for a liver biopsy. I had to wait a little over a week for the
biopsy, and then another week for the results, and I can tell you that was not
a fun time at all. There are so many
possibilities and what-ifs that start to swirl around in your head.
I have been seeing an acupuncturist for two years now for
allergy problems. It has helped a
lot. I used to have about five or six
sinus infections a year and now am down to maybe one or two per year. I told her about everything that was going on
during all of the testing. She was
actually the first medical professional to make the connection between the
liver issues and the hormonal issues.
After talking with her I stopped taking the hormones three
days after the biopsy. Five days later
the doctor’s office called with the results and told me to stop taking the
hormones.
My husband and I met with the doctor and we’re currently
taking a wait and see approach. Hepatic
adenomas are relatively rare, and from what the doctor says and from what I’ve
read there isn’t a specific, agreed upon course of treatment. They typically recommend surgical removal if
they’re causing pain or if they’re bigger than 5 centimeters. The biggest risk is that they rupture and
cause internal bleeding.
Mine aren’t causing me pain, but the largest one is 5.6
centimeters, the second one is 5 centimeters.
And I really, really don’t want to have surgery. The surgery is major, the recovery is long,
and at this point I have very little faith and confidence in the medical
profession. I can’t help wondering what
issues the surgery may create ten years down the road.
There are mixed results as to what discontinuing the
hormones does for them, but there’s at least a chance they will shrink. So that is what we’re hoping for. I will go back for another MRI in October to
see what is going on with them.
In the meantime I have stopped taking the hormones, have
stopped eating tofu, and am trying to cut out all soy products. (I had no idea how many food products have
soy! But that’s another post for another
time.) I am also trying to lose
weight. I need to lose weight anyway,
and if I do end up having abdominal surgery I am sure I will be better off not
carrying a lot of excess weight in that area.
My doctor has told me to mostly use common sense: no contact
sports or anything like that, which is a non-issue for me. I also have to go get checked out if there’s
any trauma to my right side (car accident, etc). I can’t take any blood thinners, and need to
eliminate, or limit as much as possible anything that puts a strain on my
liver. I finally kicked my soda habit
(which took off twenty pounds), and no longer have the occasional drink.
I hate having this hanging over me, but it’s a lot better
than what was going through my head while waiting for the biopsy and
results. It has also made me a lot more
concerned with getting myself as healthy as possible and making better choices,
which has to be a good thing regardless of what happens with the adenomas. So in the meantime, I will continue to educate
myself as much as possible and hope for some shrinkage in October.
So how are all of you?
I hope things have been well. I’m
really looking forward to catching back up on everyone’s blogs.
I'm glad you're back! It sounds like you've been going through a lot. Someone very close to me has a similar issue with her adrenal glands.
ReplyDeleteI'll be keeping you in my thoughts, friend.
I hope you have a nice week.
I'm so glad you're on the path to recovery. We gave up soy several years ago when we learned it was possibly effecting the growth of our daughter. We ended up spending all sorts of $ on a specialist to be told "you need to remove soy from the diet" and we'll wait and see. And that darn soy is hidden in so much! I am so distrustful of the food system now that I basically have to cook everything from scratch and follow the "Eat Clean" Diet. Which isn't a diet at all but a big lifestyle change. It's a pain but she's a normal height now. Now, if they had only caught the scoliosis during all of this, le sigh. The thing I've learned is that you really have to take a proactive stance on your health and the health of your loved ones and do your own research because so much can fall through the cracks. I wish you the best of luck and am hoping for shrinkage.
DeleteThank you! It's great to be back.
DeleteYou're so right about soy being hidden in so much! I can't believe all of the things that have soy.
Dear Danielle,
ReplyDeleteAfter reading such a detailed posting, laced with pain, frustration, hope and optimism, I shall keep this comment relatively short.
My friend, despite all the trials and tribulations, the worries that you have endured, you maintain a positive, resilient spirit. You are doing all the right things to try and maintain a healthy balance.
I'm wishing you the very best and welcome back.
In kindness, respect and admiration,
Gary
Thank you Gary! You always say the nicest things. I'm trying to stay positive; negativity doesn't help anything.
DeleteWow, that's quite a bit you're having to deal with, Danielle. Thank you for sharing with all of us. Know that you are in our thoughts, and we are sending positive energy your way.
ReplyDeleteThank you! I can definitely use any positive energy.
DeleteDear dear Danielle,
ReplyDeleteWow...I am soooo sorry you have been going through all of this. As for how to come back to blogging? Just come, sit awhile and share, or just listen, ya know? We're all still around in some way or another. You've been missed!
I can relate in many ways to much of your story. I too, have a deep distrust of our medical profession. There is so much wrong with 'big pharma' and how people are 'treated' rather than brought to complete healing in our country. I hate that you've had to go through so much.
If you ever need/want to talk more privately email me - ernie89us@yahoo.com
Prayers your way! Hugs!
Carrie, thank you so much!
DeleteOh wow, I am happy that you are doing so well after all of that and I hope that you will continue to be ok and the tumors will shrink. Having a major health scare like that is so terrible!
ReplyDeleteThank you! It's good to be getting back to normal.
DeleteSo sorry you have been dealing with all this. My daughter has PCOS and has to take birth control pills for that. She's been on them for several years, and I've never heard of liver issues with them either. Thank you for sharing all this, even though it was hard, I'm sure. We can learn from one another. Sending you best wishes for a successful lifestyle change. I'm always working on that myself. I didn't know soy was an issue either! I don't ingest dairy, so soy is my alternative. I guess I need to do more research. God bless you.
ReplyDeleteThank you for your kind words. Like I said, I struggled with how much to share, so it's nice to know that the information may be useful to someone else.
Deleteoh hon, this is absolutely insane. I am glad that you are hanging in there. they've always said taking bc pills for too long wasn't a good thing. I can't believe no one caught it sooner though! I am struggling with coming back to blogging also. Have you noticed?? Do you feel any different off the hormones? I took bc pills for a little while (maybe 9 mos) and I noticed a difference as soon as I got on them and when I got off them.
ReplyDeleteI'm glad you're coming back to blogging! :-)
DeleteIt's hard to compare being off the pills now to before I started taking them because I was on them for so long, and was so much younger then. There's a big difference between 18 and 31! I do feel much better being off of them, and acupuncture is definitely helping with the original issues. I seem to have a lot more energy and just feel better now.