Monday, May 27, 2013

I Am Back

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. 


  1. 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.

    I'll be keeping you in my thoughts, friend.

    I hope you have a nice week.

    1. 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.

    2. Thank you! It's great to be back.

      You're so right about soy being hidden in so much! I can't believe all of the things that have soy.

  2. Dear Danielle,

    After 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,


    1. Thank you Gary! You always say the nicest things. I'm trying to stay positive; negativity doesn't help anything.

  3. Wow, 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.

    1. Thank you! I can definitely use any positive energy.

  4. Dear dear Danielle,

    Wow...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 -

    Prayers your way! Hugs!

  5. Oh 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!

    1. Thank you! It's good to be getting back to normal.

  6. So 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.

    1. Thank 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.

  7. oh 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.

    1. I'm glad you're coming back to blogging! :-)

      It'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.


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