Hepatic Adenomas and Hepatic Adenomatosis and Birth Control Pills: Some Thoughts

 Don't ask how or why, but I've had to learn about every form of hormonal birth control on the planet in detail over the last several years, and lately that's caused me to revisit what was offered to me once they diagnosed the hepatic adenomatosis.

Initially, they insisted I needed a hysterectomy. I was...skeptical. There's just so little research about what causes hepatic adenomas and there is a patient community where I could see how often the tumors do NOT shrink once birth control pills are discontinued. I had a lot of doubts.

I pushed back and negotiated for a uterine ablation since my cycles are essentially stabbed-by-a-serial- killer level arterial bleeds without hormonal birth control. The one time I tried to not use the pill, I bled enough to be cold and light headed and meet the definition of emergency bleeding. Something needed to be done. I couldn't just go hormonal commando. It was just a question of what to do and I wasn't sold on the hysterectomy.

Since they planned to do an MRI every year to monitor the tumors and most of my tumors are small, they accepted my proposal to do an uterine ablation and we'd pivot if the MRIs showed the need for it. Aside from another tumor that tried to be a problem after my hepatic resection (which got as far as the tumor board but resolved on its own) all my tumors are generally stable. They do drop kick me every so often but-- so far and touch wood--the drama, while making me nervous, has always ended well.

But I ended up circling back around recently and questioning why I couldn't have taken a progesterone only pill. Not only was it not offered to me, I myself was concerned about the risk even though these tumors are supposedly more estrogen sensitive. HOWEVER, if you talk to patients, you will observe mixed outcomes. Some absolutely can't take any hormones at all because everything causes their tumors to grow, others are fine on a progesterone only pill. It's a mixed bag. Just like some see their tumors shrink after stopping birth control pills and some don't. Mine don't care about the hormones, and in fact, the tumor that tried to hemorrhage after my resection, I hadn't been on the pill for six months or more.

My tumors were small enough that I could have risked a progesterone only pill. In hindsight, I look back and realize that. I wish I had realized that at the time, but oh well. I was flying blind and the doctors were at Defcon 5. At least I resisted the hysterectomy...rightfully so it turned out.

Anyway, if anyone is ever googling this, I hope they find this post. There's a huge amount of variability in patient outcomes with hepatic adenomas and hepatic adenomatosis, outcomes that don't match the literature well, which is a strong signal that we need more research buuuuuut we're not going to get it because this is considered to be so rare and a lot of docs think all the science is settled soooo patients are on their own. 

Personally, I feel that way too many patients are on their own just in general. I doubt I'll see it improve in my lifetime, but I hope medicine sorts some of their bullshit out at some point.

When it comes to hepatic adenomas and adenomatosis patients really need second even third or fourth opinions...if the tumors will give you that time. And talk to all the patients you can find. That will help you decide the best course of action for your case more than any one doctor.  If your tumors are small, you can take more educated risks and these tumors are something where sometimes it's worth doing it. Less is more in terms of quality of life with this in my experience. The care options have pretty big impacts so dodge as much as you can...tumors willing.

And yes, my life continues to be a flaming dumpster fire...not of my making. I am too overwhelmed to go into any detail. I don't want to talk about it. Just be grateful it's me and not you. 

The only thing I'll say is the second, literally the SECOND, your aging parent is paranoid or behaving in any kind of extreme, that's the time to be on high alert. That's the sign there's issues brewing. 

I had trouble recognizing it because the first blush of paranoia was directed at me personally...which, you'd think I could have noticed, but I was so under attack and being verbally abused and my parent is a difficult personality just in general that I couldn't get past the immediate moment to think bigger. That turned out to be an absolutely HUGE missed opportunity.

Lots of hindsight going on over here theses days. Coulda woulda shoulda. Sigh.