Most of my blogs are started out of my own curiosity, and this one is no different.
I’ve read in numerous sources that people with Endometriosis need to keep our livers in tip-top condition; well-greased and in proper working order. I’ve seen a few Facebook posts from other EndoWarriors that they have heightened levels of *something* when they have a liver panel blood test done, and they wonder if their Endometriosis may have something to do with that. That struck a chord with me because I have Gilbert’s Syndrome, which is a liver disease diagnosed through heightened liver panel results.
Does my Endo affect my liver’s functions? And does that, in turn, add to or affect my Gilbert’s Syndrome? My liver blood panel test results?
I may not have found any definitive answers to my questions above, but I did learn A LOT about my liver, hormones, diet, and health. Intrigued? Read on, Dear Reader, read on.
What Does the Liver Do
The liver is the second largest organ in your body (weighing about 3 pounds) and is a big, ugly, rubbery reddish-brown organ that resides in the upper right cavity of your torso, and is protected by the rib cage. Think of it as a filtration laboratory: the liver receives blood coming from our heart (rich in oxygen) and digestive tract (rich in whatever was absorbed from the foods or beverages we ingest) and even toxins that were absorbed through our skin; filters it (removing chemicals, bacteria, and toxins); and then sends the good & clean blood and nutrients back throughout your body. It also helps metabolize medications and breaks down alcohol.
Our livers secrete bile (which helps break down fat) and delivers it to our intestines or stomach to help with digestion. The liver also creates proteins that are vital for blood clotting and stores sugar, vitamins, and minerals. Is this all the liver does? NO! It has actually hundreds of different functions throughout the body. Huuuuundreds!
Hormones & the Liver
Among its many other functions, the liver manufactures estrogen and testosterone. It is also responsible for maintaining and destroying excess hormones. Research is ongoing into understanding the estrogen breakdown and distribution by the liver, and possible effects of estrogen-related symptoms and cancers.
Many physicians and patients with Endometriosis believe there is a direct link to Endometriosis and estrogen/hormone balance. If you are one of those Believers, you’ll want to take efforts to maintain a happy and healthy liver. It’s been shown that a diet high in eating complex carbs in veggies and grains aids in the metabolism of estrogen and high in fiber intake increases the amount of excess estrogen secretion (aka, you poop it out). Less stress on our livers to have to filter it out itself. There are also many women out there who believe it is not a hormone-driven condition, but one based off of many other factors. So, this article may mean nothing to you.
Regardless of your thought process of hormone levels and Endometriosis, maintaining healthy liver function is key to keeping your entire body in tip-top condition. Which helps in the long run. With everything.
Can Endo Grow on the Liver?
It’s not a far-fetched question as it grows in so many other places of the body. During my 2014 diagnostic laparoscopy, an Endometriosis legion was found on my liver. It was deemed too dangerous to remove at that time. And by my 2016 surgery, it had vanished on its own. So, it’s not unheard of. And I personally know three other EndoWarriors who have Endo lesions on their livers. Liver-involved endo is considered VERY rare.
But in the August 2018 issue of Annals of Hepatology, a 40-year-old woman had a large mass on her liver show up in imaging studies. An exploratory surgery was performed and the mass was removed from the left hepatic lobe of her liver and a biopsy confirmed the cystic mass was, indeed, endometriosis.
An article published in 2019 was of a 42-year-old with occasional severe upper right quadrant pain, oftentimes accompanied by nausea and vomiting. She had a medical history of a hysterectomy and they had also removed her right ovary, but the article didn’t state why. And had previously been diagnosed with a hepatic mass at another hospital because of her symptoms. Physical examination showed tenderness to her right upper quadrant, tests for Hep B and C, as well as tumor markers, were normal. A CT scan showed a 3-4cm cyst on both the right and left lobes of her liver. She was given a therapy treatment and sent home with the plan to return for a hepatic resection. But a few weeks later, she was returned to the hospital due to increased instances of pain. More CT scans were ordered; the left lobe cyst remained, but they couldn’t find the right one. They immediately performed surgery and removed the cystic portion of the left lobe of her liver. Two most after surgery, she had no recurrent symptoms. The biopsy confirmed it was hepatic Endometriosis: Endo of the liver.
How to Help the Liver
Maintaining a healthy diet is critical to assisting your liver do it’s job better! The American Liver Foundation suggests eating grains, proteins, dairy, fruit, vegetables, and good fats. Also, eat plenty of fiber, which you can get from fruits, veggies, grains, breads, and cereals. Of course, those of us following the EndoDiet will be avoiding dairy, soy, and gluten.
Certain supplements are rumored to help with liver strengthening and cleansing : SAMe (aka Sam-E; S-adenosylmethionine), Milk Thistle, and Milk Thistle Seed Extract are some of the well-known ones. Magnesium is said to help with estrogen detoxification. Magnesium and calcium have been shown to decrease the symptoms of PMS. All of which is related in one way or another to, you guessed it: the liver! Tumeric has also been shown to help increase the liver’s ability to detoxify certain estrogens (it’s also great for inflammation!).
How to Strain and Harm the Liver
Alcohol is the most famous way you can damage your liver. “Pickle your liver,” is a common expression. Alcohol is processed through the liver and can cause irreversible damage, leading to many different types of alcohol-related liver disease.
Fatty foods and obesity can lead to non-alcoholic fatty liver disease. Mind your diet. Exercise. You only get one body…
If you’ve taken pain killers or headache medicine before, you may recall seeing the label about consulting with your physician regarding Acetaminophen. And you also may recall about not taking more than the instructed dose, which also means not mixing medications : taking 2 Tylenol and an hour later 2 Midol or 1 Percocet. Too much Acetaminophen can cause serious liver damage. Acetaminophen may also interfere with the effectiveness of your birth control pills. Read the fine print and talk to your doctor.
Gilbert’s Syndrome
When I was 14 years old, I was diagnosed with Gilbert’s Syndrome, I was told it was a rare condition that mostly affected men. The doctor surmised I must have contracted it during a blood transfusion when I was born (I was 3.5 months premature and spent a long time in the hospital) and that I would not be able to ever donate my blood or organs. However, I’ve since learned a few things:
- Gilbert’s Syndrome is not as rare as I first suspected, and is actually considered common. 3-7% of the United States population has it, and is more common in men more than women.
- Gilbert’s Syndrome is an inherited gene mutation, which means you’re born with it. One or both of my parents has this gene, but they may not know it.
- The American Red Cross does accept blood donations from people with Gilbert’s Syndrome.
It’s relatively harmless. And there is no treatment. But just what does it do to me?
Every once in a while my skin and eyes will turn yellow…aka jaundiced. I can also suffer from extreme fatigue during these times. The jaundice is caused by heightened levels of bilirubin in my system, because my liver is unable to process it out of my blood as quickly as it should…Bilirubin is created when old red blood cells break down, and is normally filtered through the liver. Since my liver has a defective enzyme due to Gilbert’s Syndrome, it cannot breakdown the bilirubin levels as well as it should, so it continues to circulate through my system. If the levels get too high, I go yellow, but it goes away on its own. Due to the ineffective cleansing levels of my liver, medications may have increased side effects.
Certain circumstances can affect my G.S. : fasting, skipping meals, having a cold or flu, exercising too much, dehydration, being on my period, stress, or lack of sleep.
What Have I Learned Today
My original question was, “Does my Endo affect my liver’s functions? And does that, in turn, add to or affect my Gilbert’s Syndrome?” It remains unanswered. But what I did learn was that my liver’s health and efficiency may affect my Endometriosis…And although very rare, Endo may develop on the liver. Don’t ignore your symptoms!
I learned a lot about my Gilbert’s Syndrome that I didn’t already know. I also learned that the liver does a whole lot more than I thought it did…a whole lot more. Since my diagnosis with Endometriosis, I’ve altered my diet habits, so I feel much better about that, and it seems to go with the American Liver Foundation’s dietary recommendations. I’ve also drastically reduced the amount of alcohol I drink. Which I probably should have done a decade ago…hindsight…
And I want to continue to strive to keep my liver strong and healthy. Especially because my liver already functions at a lesser rate than the average person.
What did you learn?
*Updated June 11, 2019*
Resources:
Annals of Hepatology – (Abstract; Aug. 2018) Rare Case of Hepatic Endometriosis as an Incidental Finding: Difficult Diagnosis of a Diagnostic Dilemma
Connections
Case Reports in Hepatology – (Article; 2019) Endometrioma of the Liver: A Case Report and Review of the Literature
Meta E-Health
~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa
Bloomin' Uterus 
I love ALL your posts. I always feel like i “walk away” with something. They are always so informative and even without having all the answers they remain insightful. They make me think 🙂 Thanks for posting great topics!
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Thank you SO much!! I’m glad you walk away with something 😀 It feels great to get it all out on paper, then feels even better when I get little notes like this 🙂 All we can be is there for each other ❤
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I’m being investigated for liver problems myself atm and this post really makes a lot of sense! I had no idea the liver had a connection with oestrogen! Thanks for writing 🙂
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Reblogged this on Endo Struggle and commented:
This is a very interesting read, not only from the Endo point of view, but also to me, because my Epilepsy meds can effect my liver.
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Thank you for sharing! I know it’s not chock-full of answers, but it still intrigues me…All I truly learned is that I need to care better for my liver. 🙂 I hope you do, too! 🙂
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Thanks for this post.
I’m being investigated for liver problems, as the medication I take for Epilepsy can effect my liver, and having Endo as well and taking HRT, this may also not be helping! Better start looking at a more healthy diet!
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Mmmmm food. 😉 Hoping to see if it helps with your tests! And mine!
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I love food! Gradually though my favourite foods are starting to not love me 😦 I have been keeping a food diary, and maybe it’s my liver that’s actually upsetting how things are being digested, we shall see.
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Hi Lisa, I’ve so many times come across your blog when I’ve googled something (sometimes pretty obscure!) about endo and I love your curious nature. It makes me feel right at home here when I come to your blog!
So today I found this article when I googled for “Endometriosis liver”.. Yep, would you believe that a recent CT scan (called a modified virtual colonoscopy, done by Drs van der Wat and Kaplan here in South Africa) showed that endo is most likely distributed not only ‘everywhere’ my pelvis and on my rectum and colon, but also on/in my liver?! What?!
Since I live freakishly healthily and don’t put on weight easily (i.e. don’t drink alcohol or soda, and BMI basically always below 18.5 – probably partly because I never eat fast food and always go for stuff that is ridiculously unprocessed and healthy..), it is unlikely to be the usual culprits in terms of liver lesions (fatty liver or ‘pickled’ liver). My CA125 is only 33, so it’s also fortunately unlikely to be liver metastases, phew! I’ve had appendicitis (probably due to endo last year) and has it so many other places in any case, so maybe I’m freakishly unlucky enough to actually have endo on the liver..?
There is good news too, which is that I have no big nodules anywhere, so the plan is to see whether the stupid endo will shrivel up with Dienogest (Visanne, here in South Africa). My left ureter is also displaced, twisted around some endo and just a little blocked. So fingers crossed the Dienogest will do the trick, or the ureter issue will definitely need surgery. Heck, I have no idea what options I’ll have for the liver endo if the plan doesn’t pan out! Daunting thought.
I feel kinda guilty even writing this here, but I’ve had a previous laparoscopy in 2009 (stage III endo diagnosed) that pretty much took care of both my pain issues and fertility problems. So currently, I have 2 lovely kiddo’s (would you believe that I got the best 2 ever!), and I also very seldom drink any pain meds for anything. (It was a very different before that lap, I could mention! My heart goes out to all girls still stuck with the pain and infertility..)
So I actually have little symptoms at the moment and the CT scan was mainly intended to investigate my dang cyclical rectal bleeding, to make sure it’s innocent and not causing any obstruction-type chaos or anything (which it doesn’t).
One questions I’m curious about is, how on earth does endo end up in the liver? I suppose the same way it sometimes end up in the lungs? So weird to think about it.
By the way, have a look at some of Dr van der Wat’s work on modified virtual colonoscopies if you haven’t done so already. Really interesting, cutting edge stuff!
One final thought: I also have hypermobility issues and find it interesting that 27% of girls with Ehlers Danlos Hypermobility Syndrome have endometriosis (https://www.ncbi.nlm.nih.gov/pubmed/9420859). Maybe some of your other blog readers will find that interesting, as hypermobility is a relatively common problem. One issue with us stretchy types is that progesterone sometimes make our joints come apart, so lots of hypermobile girls can’t use medical treatments for endo. My previous gynae thought I have Ehlers Danlos, but I’m not as bad as many of the others, so here’s hoping Dienogest doesn’t make me fall apart in the physical sense.
Anyway, first time I actually commented on your blog. Keep up the interesting articles though! They totally rock,
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Hi Maryna! Thanks for the feedback and the story! I’m SOOOOO glad you’re pain has been better since surgery, and that you have the two BEST KIDS EVER. ❤ Don't feel guilty – I can say that, but sometimes I feel guilty for my pain-success since surgery, too. 😉
Take heart with the liver thing – he found it on my liver in 2014, but in my September 2016 laparoscopy, he couldn't find it anywhere on my liver! Perhaps the horrible Lupron or the nasty birth control pills helps shrink the lesion. Some gals say their surgeons have removed it from their liver by cutting it away…others (like mine) say it's too risky to cut the liver. Just talk to your physicians and see what they think. And as far as how the heck it gets there? Who knows – same way it does get to the lungs, the eyes, the brain, the spine, the skin, the muscles. Bleh. Stupid disease.
I'm so glad to hear you bump into the blog when you Google something! YAY!! Raising awareness!!!!!!
And duuuuuuuuuuuuuuude we have a gal in our support group who is undergoing testing to see why she is uber-stretchy and joints are being funky. I'll have to point her to your comment! THANK YOU! See what happens when you share things?!?
Thank you, again, for reaching out to us today. 🙂 You made my morning!! Again, congrats on your success story! I'm hoping it stays successful for years to come. ❤ And give your kiddos a big squeeze today.
Yours, Lisa
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Dear Lisa, you have no idea how happy I was to read your response.
I feel quite blonde for having missed the fact that you had endo on your liver! I’ve found so many interesting bits on your blog (via Google), but I haven’t read your story before – a glaring mistake I immediately rectified! (I also subscribed to your blog to prevent further gaffes. ;-D ) It is lovely to see you handling this sucky disease with so much grace, humour and positivity. It’s also great to hear that your September lap had such a good result.
And your liver endo withered away by itself? Yay, too wonderful! I’m not enthusiastic about having a surgeon hack into my liver, or into any part of me actually. Although my insides are clearly stuck together again, it’s stuck in a way that doesn’t cause too much pain this time round. I’d much prefer not having another lap, as I’ll probably risk getting stuff stuck in a more painful configuration again.
Thanks for all the work you are doing to raise awareness of endo and reach out to other endo-gals. The ignorance out there is quite astounding. Just two days ago, I found this article on BBC: http://www.bbc.com/news/magazine-37606726 You have to ask, how on earth does this article not mention endometriosis even once??! Astounding. IT should really be followed up by someone writing to the BBC to point out that endo is probably to blame for this girl’s misery and that there are some treatments and options that might help available.
Anyhow, enjoy the last little bit of 2016 and may 2017 be your favourite, most pain-free year yet!
Love, Maryna
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*mwwwwwwwwwwwaaaaaaaaaaaaaaaaaaaaaaah*!!!!!!!!!!!!!!!!!!!! Please make sure to keep us posted on your progress. ❤
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Wow…felt like you were telling my story! Its interesting to me..how the universe brings us together.
💛🚺🌻
I’m turning 33..next July..I also have the bestest babes (2.. I call Dembabes) stage 4 endo (its bloody everywhere! Liver, bowels, overies, bladder, all over hips etc, and I have lupus)
I appreciate the time and effort of endosistas..that blog about their research..trials and tribulations!! Any validation I can find..helps with my process of healing..and trying to keep this monster..endo..at bay..so we can try to live a some what “normal” life..(that means something different to each of us.)
I have my 8th surgery scheduled for this December, to treat my endo lesions, with a team of Drs..@ UCSD La Jolla. Urologist, endo specialists, and the gastroenterologist, are planning on “looking around”…and removing what lesions they can..safely. The liver not functioning properly..is very concerning. My recent pre op blood work, showed some elevated levels..which got me an ASAP appt. w/ the liver Dr…since the surgeon who transferred me to UCSD for further treatment (awesome Dr..just wasnt qualified to operate on my bladder, liver..basically my upper abdomen..confirmed seeing lesions everywhere during my last surgery with her..& a “mass” on my liver) eek.
All the endosistas out there…know you are not alone! We have ladies..to stand behind..that are fueling the major change needed..of awareness, research, and connecting all of us sisters together. Such a blessing to not fight this battle alone..anymore!
💪
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Hi Melinda, it is lovely to hear from you. I think kiddies who were conceived after a diagnosis of infertility are often the best ones! I find it so much easier to cope with the downsides of parenting when I consider how lucky I was to be blessed with these bundles. Somehow, human nature fills us with much more gratitude for what we had to wait for and for what once seemed completely out of reach.
All the best with your December lap! Sending you much light! I hope the results will be all you have hoped for and more. Do keep us updated on your liver issues. It sound so scary, but it sounds as if you have a knowledgeable team and that you are in good hands.
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Hi Lisa, just left a long response on my newly diagnosed liver endo – eek! when I submitted, it looked as if cyberspace might have gobbled it up though. Let me know if you don’t find it and would like to know what the comment entailed. Thanks! Maryna
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Nope – I got it. It sat in my email until I got it this morning to “approve” prior to posting. 🙂 But thank you for following-up!!!
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🙂
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This is exactly what I am having. I think the endo is blocking my liver ducts and I don’t have Gilberts at all. I had my apendix removed and a part of my colon because of the endo in an emergency surgery…they didn’t even look where I am in awful pain…I have an intestinal blockage in my lower left side. Endoscopy couldn’t find it because it is exterior.
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I found this post to be one of the best posts I read yet! I also have Gilbert syndrome and I was diagnosed when I was 12 years old its caused me to have many problems at the age of 16 I had to have my gallbladder removed after developing gallstones. I have found that it really affected my bowels but since two years I’ve been suffering intense pain last year I went to the hospital for suspected appendicitis which ended up being haemorrhagic cyst and endometriosis. Since then I’ve had another two laparoscopies and it’s caused so many issues. I had also wondered if the Gilbert syndrome and endometriosis to actually conflict. I am now 22 and told that I cannot conceive naturally and still having bowel urine and cyst issues.
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Hiiii! I’m out in the desert right now and can’t text a lot…buy please email me! Let’s talk!!!! Lisa@bloominuterus.com !! Don’t lost hope. ❤ I'm serious…shoot me a note. 🙂
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I just wanted to say thank you for writing so clearly about the liver – no-one ever talks about this aspect of the condition. I’m a TCM acupuncturist and am very aware of the function of the liver in endometriosis. I will add this article to my suggested reading for my endometriosis patients. I’m at http://www.rutherfordacupuncture.com if anyone’s interested.
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