"Ninety percent of hepatic adenomas arise in women aged 20–40, most of whom use oral contraceptives." Source: Wikipedia
I have started this blog to share my experience with other people who may be going thru the same thing. Also, to warn women who are taking the birth control pill that there are real risks associated with long term use of the pill. IF YOU HAVE BEEN DIAGNOSED WITH A HEPATIC ADENOMA, PLEASE CLICK ON 'FOLLOW THIS BLOG' AS WE ARE TRYING TO START AN INTERNATIONAL SUPPORT GROUP.

Friday, January 7, 2011

My experience (ruptured hepatic adenoma)

22 July 201

I had an MRI on 16th July 2012. Doc called me with results but I haven't seen him yet so will only give a brief update here. The tumour has not changed much in size since my previous scan approximately 14 months ago, although the doc said it is "a little smaller". He has made it abundantly clear that it will be too risky to operate right now and says we should continue to just monitor. The tumour is in a really tricky spot in the middle of all the major veins/arteries which distribute blood to and from the heart, so operation to remove not recommended. Will write more soon. Had a tough weekend because on Friday I had unexplained severe chest pain. Went to hospital, but pain stopped and the people in the emergency room didn't think it was anything to worry about (allergic reaction to food or indigestion??). I am just worried because the pain was so severe, in upper chest, crushing pressure like pain also shooting into my back (mom thought it might be after effects of the MRI??). I've felt on and off weak, nauseous and just unwell this whole weekend... maybe it is unrelated or I am coming down with something like the flu?? not sure? I am going to try and arrange an urgent appointment with my liver surgeon and will let you know how it goes.
12 May 2012

A long overdue update: It is almost my 37th birthday. I was meant to have my next scan in Feb (2012), but that never transpired. I was reluctant to have another CT scan because I have read that one shouldn't have more than one a year due to radiation exposure. I was having more than 1 a year up till now. So I asked my doctor if he could rather arrange an MRI at the public hospital (discounted rate). The waiting list was not surprisingly long so my next scan is now set for 16 July 2012. Lately, I have been experiencing some bad days. The indigestion has increased accompanied by burping and nausea, an empty stomach feeling, constipation, inexplicable chest and colon / tummy pain, etc etc (very similar to the symptoms experienced when I came out of hospital). I seem to have spells that occur about once a month (last 2 or so months) for a few days at a time (about 3 or 4). The rest of the time i still experience the indigestion systems and nausea, but not that bad. So, I guess I have been a little bit worried, but so much. I am just eager to have my next scan to see what the heck is going on. It seems to be more of a digestive system problem so not sure if it is even related to the HA, although I somehow think it is. I still experience liver pain from time to time but it is pretty mild. I am starting to keep a diary of my symptoms to see if I can puzzle together the pieces of what is causing it. Perhaps it is my diet? I have been 'letting go' a bit over the easter holidays, i.e. eating richer foods and drinking one or two glasses of wine on Friday and Sat nights. So, I guess I am just going to have to pay more attention to my diet again and see if that helps. Although the above sounds bad, I am otherwise okay and coping well with work and very strong, mentally and physically. It is just on those bad days when I am down and out... about 3 to 5 days in the month. I am also wondering if there is a link with my menstrual cycles and this. I am a believer that everything is linked, especially when it comes to issues of the liver (the organ that regulates hormones in the body).My menstrual cycles have not been as regular, arriving later than usual lately. So, yeah, something is changing inside, but like my hubby says, I must 'roll with the punches'. Sometimes we have to feel worse before we get better. Will keep you posted. xx

30 December 2011

I turned 36 in June. I had one more CT since the last one listed below. I must dig up to check what the date of that one was. I was meant to have one in October 2011 again but I've asked doc if we can postpone until Feb 2012. Will let you know how that one goes. I've been feeling fine and still get pain once in a while, but I am a 'healthy' weight again and my menses have returned and are much heavier now. I find that when I am stressed, my pain returns so I know that stress must be avoided! When I do get a pain, it is really not that bad. It just makes me worry, that's all.

06 January 2011

I am now 35 years old. It has been nearly a year since I was diagnosed as having an hepatic adenoma (was aged 34). I never knew I had it until it ruptured causing an emergency situation in which I had to be rushed to hospital.

Today I still have the tumour inside of me. My next scan is scheduled for 11 April 2011 and will then be able to give you more news regarding further progress.

Last CT Scan was on 26 August 2010:
The tumour is now 8cm x 8cm, so looking back, here is the progress:

At 26 August 2010: 8cm x 8cm
At 6th May 2010: 15cm x 12cm x 11cm.
At end of March 2010: 16cm x 13cm x 13cm.

This means it has shrunk by approximately half its size since end March (in 5 months). [in terms of volume, one fifth of its original size!]
[Bear in mind that much of the shrinking, up to this point, is as a result of the disappearing/dissolving of the old blood from the internal bleeding that took place when rupture took place. I am not sure what size the tumour was before rupture/internal bleeding took place.]

Here is my story:-

On 8th February 2010 I was rushed to hospital with severe abdominal pain and a distended (raised) tummy/abdomen. Prior to this date I was a healthy 34 year old female living in South Africa.

I had to undergo many tests that night and the following day before the doctors diagnosed me with a ruptured hepatic adenoma. A hepatic adenoma is a benign tumour on the liver and in most cases (90%?) it is associated with long term use of the birth control pill. In my case, this was most certainly the cause as I had been on the pill for about 15 years of my life.

What had happened on that day was that a blood vessel inside the tumour ruptured causing internal bleeding (within the tumour). This caused the tumour to expand like a balloon filling with blood [internal bleeding] (hence my large tummy/abdomen and severe pain). Prior to this event, my tummy/abdomin was flat and I had no idea that I had the tumour.

The doctors had to perform an embolisation to stop the blood supply to the tumour. I also had to receive two blood transfusions due to blood loss. The embolisation procedure was successful. Now that the blood supply to the tumour seized it was now possible for the tumour to shrink in size. I still had to be in Intensive Care for two weeks so that they can monitor me daily to ensure that the bleeding had stopped, etc and to ensure that all my blood tests (liver function, white blood cells, etc) started returning to normal. While in intensive care I underwent lots of other struggles which I will not elaborate on here (severe reaction to pain killers and antibiotics, lack of appetite/weight loss, sleeplessness, etc).

Finally, they found a painkiller that I didn't react to and my recovery started. After two weeks in ICU, I was moved to a normal ward where I stayed for one more week before I was released from hospital to continue my recovery at home.

The tumour casing (including the blood filled area) was huge (18cm). The doctors at the hospital I was admitted to said it is the largest they have encountered. They decided it was too risky to operate and remove it straight away and rather opted to do the embolisation and to give the tumour time to shrink (and for all that blood to dissolve).

19 June 2010:- I am still at home, doing much better, but I still have not had the operation. My last scan to see if the tumour has shrunk was in the beginning of May. That scan showed that the tumour had shrunk to a size of 15cm x 12cm x 11cm [the previous scan done in March? 2010 showed the size as 16cm x 13cm x 13cm]. The doctor said that he was going to consult with other doctors overseas about the way forward (wait longer to operate or operate now?). We now await feedback from the doctor, but we assume that it has been decided (for the time being) that it is in order to wait until the tumour shrinks further. I will phone the doctor next week to follow up.

When I came out of the hospital I stayed in bed for the first couple of weeks just sleeping alot. I had lost lots of weight and needed to get my weight up again. I've never been that much over weight (maybe just 5kgs), but now I needed to put back that weight that I had lost. This has been pretty difficult. I have gained a few kgs over the past few months but am still not at the weight that I used to be.

I am working again and have been working for a long time now (started working very soon after I was released from the hospital). I am blessed enough to be able to do most of my work from home.

I have changed my diet slightly, although the doctor didn't say that I had to. I am 'juicing' now about 5 times a week (I make juices from fresh celery, apples, beetroot and carrots, etc). I also have reduced my meat intake. I've also tried to incorporate light exercise atleast 5 days a week.

You are probably wanting to ask me now about the pain. Well, aside from the excruciating pain I underwent on 8th February and in the hospital in the days that followed, the pain has not been so bad otherwise. The biggest struggle for me has been the emotional/mental side of it (and the reaction to the painkillers!).
As for the emotional and mental side of it, I get my good and bad days. The bad days are REALLY bad. I can't describe how bad it is but to put it mildly it feels like the end of the world and that there is absolutely no reason to carry on. If you have gone thru a similar experience and you feel like you are going crazy, know that you are not alone and that you are not going crazy. There are small things you can do that will help. I didn't want to share my anguish with my hubby because I had already put him thru so much hell with this. But finally, I agreed to start talking to him more about how I feel from day to day. He said that he would rather know what I am experiencing than not know, no matter how terrible it is. This has been such a great help. If I feel a certain way one morning, I tell him. This helps so much. Talking to other people also helps. People that care, of course. And it especially helps to talk to people who have also been in hospital or who have also had a traumatic physical experience. It doesn't matter if it was a different type of illness because on the emotional/mental side of it, the symptoms/experiences can be very similar. Another thing that helps is prayer. I felt that I completely lost my faith in G-d and I am still struggling with this. But over the past few weeks it has been a bit better and I pray every morning in bed before I get up. Also, my dad has given me a new motto to live by. He calls it "Odaat". This stands for "One Day At a Time". The key is to stop thinking ahead or looking back but to rather just live in the now (read Eckhardt Tolle's books). When having a bad day, just remember this saying and also know that no matter how bad it feels, it will end and it is just a feeling. Also, the biggest help is to have people in your life that love you unconditionally. I am very blessed in this regard. I just need to get over the guilt of putting them thru this.

MY MESSAGE TO MEDICAL PRACTITIONERS

I thought it necessary for me to include a post, specifically addressed to medical practitioners, regarding my experience with doctors prescribing contraceptive pills / hormone therapy as, not only birth control, but also a treatment to regulate menstrual cycles and to treat acne. Every doctor I met promoted the pill in a manner that makes one believe that there are no side effects to be concerned about. The doctors never asked how long I have been on the pill or never checked contra-indications with me. They never told me that it is not advisable to take the pill for long periods of time. I know it is our responsibility to read the fine print on birth control packages, but I still feel that doctors have a certain responsibility to warn their patients about the risks. Some of the pill inserts state that side effects are very rare (1%), but I am sure that this figure is inaccurate based on the high incidence of HAs occuring in women using contraceptive pills over extended periods of time. I could not find any inserts which warns against long-term use of the pill.

My history with doctors prescribing contraceptive pills
I started my menses at the age of 12 and had no problems up until after I was 16 years old. At the age of sixteen, I became sexually acvite. At the time, I was living in the United States and it was very easy for me to go to my local "PP" to obtain free birth control pills. Shortly after this, still in my teens, I started experiencing galactorrhea. I went to the doctor and the doctor found that I had elevated prolactin levels. I stopped taking the pill to see if this would resolve the problem. I then started experiencing amenorrhoea (menstrual cycle ceized/stopped). I was then told by the doctor to start taking the pill again. When I was 18, a doctor diagnosed me with 'indirect evidence of a micro-prolactinoma' and prescribed [...] and stated that I should go for a follow up scan in a couple of years time. After reading up on it, I decided not to take the [...]. I had a fair amount of acne as a teenager and as I hit my twenties, my acne became worse. I consulted another doctor who suggested I change the pill I use to another type which will help with my acne. I did so and continued taking this pill (or the generic version of it) up to the age of 30. In conjunction with this, when I started this new pill I also underwent brief treatment with an anti-androgen drug. I eventually had two more scans following this (one CT scan and then an MRI several years after I stopped the pill). Both showed no evidence of a prolactinoma, although my prolactin levels remained elevated (fluctuating), but not as high as before. When I stopped taking the pill (30 years old), I waited almost two years to see if my menstrual cycle will return naturally. It was hell coming off the pill - I think I can compare it to going through withdrawal. When my cycle did not return, this was the time when I had an MRI scan which confirmed no prolactinoma. The doctor suggested that I go back on the pill to help re-start my cycle. I refused to do so. I then read up on some natural alternatives and through changing my diet slightly/vitamens, I was able to get my menstrual cycle to return. About a year and a half later, the HA ruptured. At no stage in my medical history did a doctor examine me to check for the possibility of an HA.

There is no denying that up until now contraceptive pills have largely been promoted by the medical fraternity in the same fashion as condoms and topical acne creams are being promoted. I would like to plead with medical practitioners to exercise care when prescribing contraceptive pills. Advise your patients about the real risk of taking contraceptive pills for extended periods of time.

I would like to end by thanking all of the doctors that played a roll in saving my life when the rupture took place by making the right decisions during that critical time.

115 comments:

  1. Hello! I just read your blog. Thank you so much for posting your story. I had something similar happpen to me and its so nice to find someone who knows exactly how your feeling. I had 2 tumors (10cm and 6cm) removed along with 15% of my liver. The road to recovery has been bumpy. I have had pains here and there lately and its got me worried. I still have one tumor that is 4cm that I really worried about. I am off my birth control pills and have been for several months. I thought I was doing the right thing by taking birth control. I have also felt really overwhelmed lately by just thinking about what I have been through and what might happen. I dont go back till October to have an MRI. I am sorry to dump all this on you I just havent had anyone who really understands what happened to me. Thank you for your post it has helped me a great deal. My faith in GOD strengthened during my ordeal and know yours will too, I believe HE led me here to your story. Please respond back I would like to know how you are doing? GOD Bless You!

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    1. Hi Christy... how did your MRI go last Oct? Hope you are doing better. When I get pain from time to time, my hubby tells me it is "shrinking pain" to help me feel better :) I know how you are feeling...i.e. overwhelmed.. it took me a year to become more emotionally stable after my rupture. You also have to remember the 'storm' of hormones inside you play a role also. Keep up the strength!

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  2. Thank you very much for sharing the information and your story. It is comforting to know that there are others with similar stories out there. It has helped more than you know.

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  3. I was diagnosed with having a Hepatic Adenoma at the age of 17. A year before that I began to take the pill to treat sever menstrual cramps. Since then I've found that very few girls, my age especially but also older, know about this scary side effect. Furthermore, in reviewing the websites of the birth control pills I used, I was unable to find information warning consumers about the risk of Hepatic Adenomas. Thank you for helping to spread the word and I hope you're doing well.

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  4. Thanks for sharing your stories ladies.
    I am 47 and had HA in my early 30's (2 tumors) when I was living in Los Angeles (I now live back in Australia) I also was told my HA was due to the pill as I was taking it at an early age too. My HA ruptured and I was admitted to Los Angeles County Hospital after 1 week of painful abdomen stress. At that time, years ago, (I think in 1996, about 16 years ago) lucky for me a specialist was assigned to me and embolization was preformed which effectively shrank the tumor and stabilized my health, as they thought I would have to have a blood transfusion and my weight and health etc. was extremely compromised (to cut a long story short) my specialist requested 2 more embolizations after the first one, as my HA shrank so dramatically that they did not show up on the last MRI, just small amounts of blood. This was about 6 to 8 months after the first embolization. So I was very lucky to not undergo the partial removal of my liver. I had a MRI every year for 5 years after that and sill no sign of the tumor, it was a great success story...Soooo This is was great news at the time, cos I was extremely stressed about the surgery, even thinking of moving back to Australia. However!!! Now years later not using the pill for 15+ years or any hormonal contraception I am now experiencing extremely bad fibroids causing really bad menstrual cramps and excessive bleeding and blood clots to the point that I cannot leave the house in fear of accidents. After many doctors and extensive reading about fibroids the only way they claim to control them without a hysterectomy is hormones!!!! And its also come to my attention that most of the information indicates that in most cases fibroids only occur in women over 40 with high levels of estrogen....well now I wonder if my body just produces a high level of estrogen normally and when I was on the pill increased this level to the point where it was dramatic causing HA along with prolonged use of the pill did not help either and now that I have not been taking the pill and am over 40 look what happens... I obviously cannot get HA cos of my age and I'm not on the pill so instead what happens.... Fibroids; another hormone issue. My options with this is embolization again, they say this is a temporary solution, progesterone hormone therapy (IUD) or final last resort hysterectomy. So ladies I just wanted to add another point of view, its good on one hand, but then on the other years later....Just a thought. Its always good to share, but everyone is different and have different issues with there bodies. Good luck and keep positive thoughts.. it helps me.

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  5. Hi ladies, thanks so much for all of your posts. I'm doing well! I still have the tumour inside of me, but my next scan will be in February (2012) so will have more to report then. Regarding the last post (re fibroids), thanks for the information although I must admit I am not too happy to hear about it. In the past year my menses have become much more heavy so not sure if this is related. :( But I will try not to worry about this now also. Does your doctor say that maybe the fibroids will go away once you stop menstruating (menopause)? Is fibroids life threatening or can it lead to any other thing that is worse? Are the only symptoms cramps and heavy menstruation? Does it get so bad that you feel faint or that you faint? Please could you 'follow my blog' so that I can stay in contact with you? Your post says 'anonymous' so I don't know how to contact you. You can reach me on: moreofwhatweneed at hotmail dot com.

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  6. Thanks for this blog. I wish I had known the dangers of how long-term use of BCPs could cause these liver tumors. I was just diagnosed with multiple "liver masses" (by accident) when I was being treated for a back strain ... Now, I'm waiting to see what the specialist plans next ... biopsy, endocscopy, or colonscopy (depending on location of tumors). One is 8 cm, one is 4 cm, and mutliple smaller ones. They think they are hepatic adenomas but won't know for sure until biopsy is complete. Now that I read about change of rupture, I am nervous for sure! Blood work was fine, CT and MRI both showed masses. Now it's a waiting game.

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  7. Thanks for your post (31 Dec), please do keep me posted about the outcome of what your doc decides. In the meanwhile read up as much as possible and please sign up to this blog as a follower as I am trying to make an informal international support group. I don't know what to recommend in terms of whether doc should do colonoscopy, biopsy, etc, because they only found out about mine when it ruptured so I never went thru that part of it. I did read somewhere regarding the prospect of a biopsy and why not to do it but it could be that it was in relation to where the tumour was situated. I think there was concern that it might bring on a rupture, but not 100 percent sure about that so do keep doing your research on line and let us know what you find and good luck! You are lucky they have found it now and I am sure you are going to be okay so don't worry too much! We are all still 'alive and kicking' ;)

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  8. I had an HA removed in 2003 when it was 8.5cm. I too was on birth control pills here in UK and aged 29. I am now approaching 38 and today have been to my doctor with pains presenting in my rights side. Looks as if my liver is at least 3 inches enlarged. My doctor said she could not rule out the return of an HA. I now have to face the whole round of tests again and all I can think of is how horrendous it was 9 years ago...and here we go again !

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    1. Hi there (14 Feb), I am so sorry to hear about your news. Please keep me posted regarding the outcome.

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    2. Hi Feb 14, sorry to hear about ur news . How are u feeling now? hope u are feeling better :)
      keep us posted of ur outcome

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  9. what are the odds that I am also from South Africa, (now living in the states) and am Jewish too!.... I'm starting to think these buggers are discriminatory. I was diagnosed with this about a year ago when I was having my lungs scanned...I'm only 23 but I began birth control at age 13 after becoming incredibly anemic during my period. I have a Dr.s appt. on wednesday to see if it's grown. P.S. It helped me to name mine after an ex boyfriend...

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    1. Hi Feb 27 poster... how did the dr's appointment go?

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  10. I have just been diagnosed with an hepatic adenoma. I have pain most days under my right ribcage. My doctor says there is NO WAY that the adenoma can cause me pain, and I'm not sure he will want to remove it. Any thoughts?

    Wendy

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    1. Hi April 8, We are all living proof that HAs do cause pain. In my case, thankfully the pain has not been that bad and does not occur all of the time. How large is your HA? How old are you and how long have you been on the birth control pill? Re removal, it all depends on location and size of the tumour. Removal is not always necessary, just in the case where rupture is a risk factor (the larger the tumour, the larger the risk of rupture).

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    2. As of March 1st, it was a little amaller than a golf ball. I have another MRI at the end of May at Vanderbilt. I saw a liver specialist there after my PCP was unsure what to do. The radiologist here (small-town) diagnosed it as an atypical hemangioma, but when I saw a specialist, he was pretty sure it is an hepatic adenoma. He was very unhappy with my MRI images from home, so he wanted me to wait a bit and have another at Vanderbilt.

      I am 45, have three teenagers and an 8-year old, and I believe I took birth control bills for 6 years at the most, and that was not all in one stretch. I think I am in perimenopause, and I have read that estrogen levels can escalate then, which my have caused it to change or grow, as I never was aware of any pain until about three months ago.

      The HA is located on the right inferior lobe of my liver. I nearly always have pain, although it changes quite a bit in intensity. It mostly hurts behind my right ribcage, and I have the feeling that something is "in the way" when I bend. I can't sleep on my right side, as I feel like I am sufffocating. I am a symphonic musician, somtimes rehearsaing in a sitting position as much as five hours a day, and that becomes uncomfortable after a while.

      I have read that about 10% of HA's can become malignancies, and that concerns me, too. Thanks!

      Wendy

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    3. About 10 months ago, I had massive pain in my upper abdomen. My doctor referred me for an ultrasound to see if I had gall stones. Luckily I didn't, but they did find a shadow on my liver. I was referred for an MRI to check this out. It was supposed to be an urgent MRI, but the hospital lost my referral. After lots of chasing, I finally got my appointment date 2-3 weeks later.

      The MRI results showed multiple small blushes on my liver and one larger one, around 1.1x2.2cm. They said it was a haemangioma and nothing to worry about unless it was growing. I would need another follow-up MRI in 6 months' time. I asked my doctor if the haemangioma was causing the pain I was experiencing but apparently it wasn't large enough, so he said the pain must be referred pain from my bad back.

      Six months later, I had to keep chasing for my MRI because my doctor didn't fill in the referral paperwork correctly. I was put on a 6-week waiting list as they said it wasn't an urgent referral.

      On the day of my scan, the hospital phoned and said they would need to reschedule my appointment, because they'd had too many emergencies in that day. I am not confrontational and normally I would’ve just said ok, but I felt like enough was enough and I pointed out that my appointment was already 2 months’ overdue. I really felt that I needed the MRI on that day, and that I shouldn't wait any longer, because I didn't think my doctor could be right about the referred back pain - my pain is below my rib cage, and when I bend forward it feels like something is being squashed and can really hurt a lot.


      The results came back inconclusive. The tumour had grown by 50% over 8 months, to 2.2x3.3cm. It didn’t look like a haemangioma as it showed evidence of scarring, so could be an FNH, but these do not usually grow. FNH can be confused with adenoma, which DO grow. The hospital had to have a meeting with their interdisciplinary team to work out what it was.

      All the signs were pointing to an adenoma, which have a small but real risk of turning malignant. Also, pregnancy is not recommended. I am 29; I do not yet have children but I do want them in a few years. There is also a risk of haemorrhage and internal bleeding.

      I had my meeting with the specialist on Tuesday, who said I have a hepatic adenoma, which is linked to long-term use of the contraceptive pill. I have been on the pill since I was 15, due to massive period pains when I was a teenager. The surgeon has advised me to immediately stop taking the pill and I will go back for another MRI in 3 months’ time.

      There is a small chance the adenoma will regress in size, but if it hasn't, or if it is still growing, I will need a liver resection to remove it. The surgeon confirmed I should definitely not get pregnant whilst I have the adenoma, as it would grow and there’s a high risk that it would rupture and cause internal bleeding. However, once the adenoma is removed I will be able to have children, which is a huge relief.

      I’m really worried about not being on my pill, in case all the pain comes back. But I know my long-term health is more important. I never knew that this could be a side-effect, and I don't think enough people know about it. I have to accept that I will most probably need surgery in a few months' time. I've read that there can be lots of complications. I'm scared it will haemorrhage in the meantime.

      I am so glad I didn't let them reschedule my second MRI. At least now I know, and I know that the adenoma IS causing the pain and they are taking the problem seriously now.

      It’s so frustrating that this could have been diagnosed 8 months ago. I could have stopped taking my pill then, and maybe the adenoma would have disappeared by now, or I could have already recovered from the surgery. Now I have yet another wait. I'm so angry that they got the diagnosis wrong, and that I've had to be in pain all these months when I needn't have been.

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  11. Hi, I am very happy to have found this site. I was diagnosed with hepatic adenomatosis in Jan 2012. The masses were discovered by ultrasound. I was anemic and had an elevated alkaline phosphate level. Yes, I took bcp for over 20 years. I am curious if any of my tumors will shrink with the discontinuation of bcps. I have a followup MRI in jul so I will find out then. Thanks for listening.
    Liz

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  12. Hi May 26. My MRI is also in July (16th), the first one after over a year of no scans so really looking forward to finding out what is going on. In my case I didn't know how big my tumour was before it ruptured and when it ruptured it expanded to a much bigger size due to it filling with blood. My rupture took place 2 years after I stopped taking the pill. Apparently it has been documented that the tumours can shrink when stopping the pill. I think it all depends on your hormone levels so when you stop the pill or hit menopause, etc, these levels change so will have some form of impact. The most important thing is to keep monitoring the tumours regularly. Please let me know the outcome of your MRI and the size of your masses. Mine has been shrinking over the past few years but the shrinking has been mainly due to the dissolving of the blood from the rupture. Hopefully at my next scan we will be able to tell if all the blood has now been dissolved and also if the actual tumour itself has shrunken. Will let you know.

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  13. Hi, i am diagnosed with the hepatic adenoma this early June. Went for a resection and is now resting at home. I had minimal symptoms of pain, even if i had i brushed it aside as it wasnt very painful. I was in shock when they first discovered the tumour. The doctor thought that it could be something worse and reccomended me to a liver surgeon to have it surgically removed ASAP. I was also off the steriod which might have caused the HA (i was on the drug because of other medical reasons) I want to ask if any of u all here is free of HA many many years after the operation? I am very worried that it will reccur as I have read in many posts, it is causing me a lot of distress and i cant seem to find myself to be happy anymore.

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  14. Hi June 27, I really don't think you should be worried as long as you have a scan regularly, maybe once a year or once every two years to make sure there is no reoccurance. That way, if there is one, then you will catch it early. Luckily with HAs the tumours do not go malignant so the only other risk is rupture and rupture is more likely the bigger the tumour is. So, if you keep monitoring, you will always catch it early, so don't spend anytime worrying okay? :) (p.s. How big was the tumour they removed and do you know where it was situated on the liver and how much of your liver they had to remove? Please let me know how your recovery goes)

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    1. Hi Ninette, thanks for replying to my post. It is a great help emotionally to know that I am not alone and there are people who had been diagnosed with hepatocellular adenoma and have been living a normal and fufilling life after surgery. I think my tumour was around 5 cm big when it was removed and it was an open surgery. The doctor told me that it was located in the left side of my liver and i had my left lobe of liver removed.

      I am almost 4 weeks post op now, been resting at home and the wound seems to be healing quite well. Even though this adenoma happened to me, I feel blessed that it was detected relatively early so that a surgery will fully remove it. There had been some itching feeling near the top of the L shaped wound and I have been feeling some on and off pain under my left breast bone, quite near to the tip of the wound actually. I am scared that what could have caused it, my mum assures me that it might be due to the tight stiches or muscle cramps. Have any of u all have this kind of feelings before?

      As I am only 21 now, i am very worried of what the future may hold. I have so many unfinished dreams which i want to accomplished and things that i want to do, it brings me to tears everytime i think of the unknown that might happen in the future.

      sincerely
      W

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    2. Dear W, don't be despondent, you are still young and strong and I know you will get through this. Post "op" (after operation) is a very difficult and emotional time. Your whole life was turned upside down and your body doesn't know what hit it. I took one year to get over the mental anguish I went through after the rupture and I didn't think I was going to be able to live a normal life again. I felt scared, unstable, overwhelmed and utterly hopeless for all that time. Luckily my husband and parents stood by me. Their love and patience saw me through and after that, I enjoyed life better than ever before, appreciating the beauty and magic in everything. You will actually, one day, be glad you went thru this hardship because you become a better person for it afterwards. Hang in there. You are going to be just fine and keep working on those things you want to accomplish. There is no reason why you can't do those things. You are so lucky because you still have your whole life before you and you have caught this now so early. Just a q, did the doctors tell you what might have caused your tumour? were you also on the birth control pill? Also, it has been a while since your 30 June post... how are you? Love Ninette

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    3. Hi Ninette,
      I am feeling much better already. The first month post op and really emotionally straining. I became paranoid over every small stuff that happens and was worried all the time. I felt scared and alone alot of times. Did you kind of experience this before? It didnt help as my relationship with my bf wasnt going well. Luckily I had my friends and family to encourage me.

      The doctors said that it could be due to the steroid that I was taking for my other medical condition. I did a little research online and found out that my medication was sort of similar to birth control pill because of the drug content.

      My next doctor appointment will be around half a year later already. I am trying very hard to put this behind and carry on with my life.

      How is your latest scan results? Hope everything is going well for you too :)

      Sincerely
      W

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    4. Hi W, yes, the paranoia was also something I experienced. This is normal and I would say a type of post traumatic stress reaction. Thankfully time heals. Will do a new post soon so that you can see what has happened in my life the past 6 months. take care

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  15. I can't find anything on non-operable hepatic adenoma - the progression of the disease or prognosis. I have been told it is terminal, non-operable with imminent death 6 mos to a year Can you point me in a direction to find out more?

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    1. Dear 11 July, this is the first time I hear of doctors saying that a hepatic adenoma is terminal. Perhaps you should get a second opinion? My tumour is also situated in a tricky spot and my surgeon said it is too risky to operate right now. I can only think it is terminal if it is cancerous, but if it is cancer, it would be called something else, not an H.A. Please explain why your doc says it is terminal? Perhaps you can send me your case history and I can speak to my liver surgeon to see what he thinks??? I pray that you are given strength and courage to get through this.

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  16. Thank you for posting. I just started researching after I have been diagnosed with a 4.8 mass.I went into the hosp with terrible upper abdominal pain, with nausea, and shooting pain to my back.The dr toldme it was gastritis which didnt really make sense to me but after reading you had the exact signs and symptoms its apparent it was from the adenoma. The dr wants to operate which I am very scared of but I have read if it becomes malignant it is now then unoperable.Do you know anything about the ablation procedure that significantly shrinks the mass? Do you know if once its shrinked the chance of becoming malignant will decrease? I also am wondering what life will be like after part of my liver is cut out if I do the surgeory.No alcohol I heard and limited medications? What about physical activity? Im very active and when im not working out reguarly everyday life piles on me heavier and I become depressed. Working out seems to keep me in good spirits for the most part. Im very scared of how my life will be post surgery and how long it will take for me to go back to my normal lifestyle. Any input?

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    1. Hi Aug26, my surgeon is of a different view. he says that chance of malignancy is very small in the case of HAs. The biggest risk for larger HAs is rupture. If the tumour is in a good place for resection then I would opt for that, but perhaps get a second opinion from another liver specialist first. The liver is amazingly resilient and can regenerate, so as long as op is an option, it may be worth considering. In my case, surgery is not an option, too risky. I would avoid tight fitting clothing/bras and don't think exercise is a problem, just don't strain yourself too much. Good luck.

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  17. not happy that I shared my story 22/08/12 - and is no longer on here?

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    1. sorry about that, but i am the only person operating this blog and I haven't deleted any posts. Not sure what happened there. Please feel free to repost.

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  18. Hi Ninette,

    I am so glad to find this blog for some emotional release.

    I am a 32 years old Asian girl. I have 2 lovely sons, 3 years old and 1 year old. About a month back, I went for a health screening to utilize a company benefit. It was the first time I did an abdominal ultrasound. I shudder as how close I was to missing that as I had a few options and typically ladies will go for the pelvic one. Thank God, I recalled my OB probably scanned my pelvic region a year back post delivery.

    Scans revealed a 2 cm mass and I was asked to find a liver specialist. That was one week back. My whole world came to a standstill. I selected a specialist from my company’s panel of Drs. On Tuesday, Dr ordered gastro, colonoscopy, blood tests and a MRI on Wednesday. He’s thoughts are no tumor should be taken lightly until proven otherwise. Gastro, colonoscopy, blood tests is ok. AFP is ok. As the mass is small, the radiologist narrowed it down to HA or the cancer one. My liver Dr favors the HA as the preliminary diagnosis. But is putting me on a 2-month surveillance (Gosh! how am I to sleep proper for the next 2 months. We will watch the mass through blood tests and ultrasound for a more conclusive diagnosis. If it’s still uncertain. Probably a biopsy. If it’s HA, Dr recommends the direction of burning it off. No further details offered. Meanwhile, I have to stop breastfeeding to bring my hormones to a neutral level. Hopefully, the mass will shrink. By the way, I had only been on birth control pills probably 10 years back for a 2 year period at most. So I don’t know if that was the cause.

    So the technicalities are all sorted out. My Dr is so factual. I’m left with the emotional gap now. Only my husband knows. We decided against letting my elderly parents know until it is more conclusive. I don’t want to worry my sis too, as her daughter is preparing for an important exam. My birthday and my son’s (we share the same birthday) is next week and everyone is excited about the party. Honestly, I was ready to quit my job because of a wrecked up boss. But now, I have to stay (cos company’s insurance is paying for my medical bills). I notified my manager this morning of the claims (he replied by telling me how his brother in law, mother in law died from cancer). Honestly, I can’t function at all, just staring at my monitor blankly. My greatest worry is my 2 boys and everytime I look at them, I want to cry. Although the Dr had been rather positive of survival (either way), it’s on my mind all the time. Who cares about spreadsheets, metrics, or colleagues getting hanged up about a polishing job that took 58 hours.

    My peeve was that during MRI, the clinic played “End of the world” on the CD. And I heard the entire piece between the 15-20 min gap. I chided the nurse that everyone does the MRI for a reason it’s not fun to be all strapped and confined in a hole, for a tumor investigation and listening to “Don’t they know… It’s the end of the world… it ended when you said GOOOOODDDDBYEEEE”

    Thanks for letting me open up my heart in your blog. My next Dr meet up is on 5 Oct. One day before my eldest son 3rd birthday. Please pray for me.

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    1. Dear AnonSept6, How did your 5 Oct appt go? What is happening? I pray that it turns out to be an HA rather than cancer. HA you can still lead a norman life so don't worry! Our biggest enemy is our mind, so try and train your mind not to always think the worst. I know it is easier said than done (first hand experience!). Hang in there and please let me know how you are doing. If you are not happy to give your name, please at least give your initials so that I can tell you apart from the other anon posters. xx

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  19. Hi

    I was diagnosed with an adenmona in was found in my liver by accident whilst undergoing an ultrasound scan for something else. The adenoma is approx 2cm. I have had biopsies taken of the adenoma, however it was difficult for the surgeon to get to and he is still not 100% sure that it is not harmful. I am 26 years old and have been on the same contraceptive pill for 11 years. My surgeon is certain this is what has caused it. I am still under his care and have to have regular scans on my liver to monitor the growth etc. I had a follow up MRI scan last tuesday and I am waiting for the results at present.

    My main concern is pregnancy. This is something I have discussed with my surgeon. He has told me if I fall pregnant I will be monitored by scans every month and if the adenoma grows too much they can operate during pregnancy. He has told me due to the position of thr adenoma I will require major liver surgery as nearly half of my liver will need to be removed with the adenoma. This is major liver surgery and will have a very long recovery period as well as the operation having lots of other risks.

    I am scared. The following questions keep going through my head.

    Do I risk the falling pregnant and maybe the adenoma growing and turning malignant or rupturing?

    If I did fall pregnant and the adenoma did grow or rupture and I needed the surgery, how would I cope recovering and looking after a new born baby?

    If anyone has any info or has been in this situation please let me know, I would appreciate some advice.

    Claire

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    1. Hi Claire, don't worry, one step at a time...did you get the results of your last MRI? You are lucky the tumour is not that big and you have caught it while you are still young. Let me know how the scan went and then we can talk again. Sending you strength.

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  20. hey Claire,

    I posted the post before you.Recent scan shown that my little lump has grown slightly to 17mm. Original was 14mm (my liver specialist did not inform me the exact size originally). Since it has grown, i was ordered a biopsy the soonest. Now we don't know for sure what it is, adenoma or bad tumor.

    However, we are going to burn off the lump during the biopsy. So all good, bad or ugly will be burned in the same procedure with the biopsy. Since yours is small too, maybe you can do the same thermal ablative procedure too.

    It is done so neatly that my liver specialist said that i can climb a mountain the next day. And once gone, you can proceed with pregnancy.

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    1. Hi Anon 8Oct, how did the procedure go? Love, Ninette

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  21. Hi All -
    I have recently been diagnosed with what my hepatologist states are "innurable" hepatic adenomas. The adenomas are a;; fairly small, with the largest being less than 4cm. I have been on birth control since about 15 (I'm 33 now) due to severe menstrual cramps. I was a surrogate last year and underwent IVF. I'm not sure if the IVF and pregnancy have had anything to do with the adenomas. In any case, I've stopped my birth control and will have an ultrasound in 6 months (June 2013) to see if my tumors have reduced in size at all. Since I have so many, and they are throughout my liver I am not a candidate for resection. My doctor has said that if the tumors don't shrink, I will most likely need a liver transplant.

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    1. Hello Jessica,

      I have just finished reading your story and beleive it or not, my story is almost identical! In October, I was diagnosed with Multiple Hepatic Adenomas (in excess of 30), the largest being roughly 4.5cm. I was on BC from the age of 16 tillast month (I'm 39). I. too, will have another scan in June of this year and will have the same outcome as you have listed above. The largest of me tumors is on the outer layer of the Liver and is pushing against the capsule, which creates pain for me. Have you had any pain? I'm trying my best to keep my chin up and hope that you are able to do the same.

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    2. Hi Jessica & anon4Jan, thank you both for sharing your stories. Please keep us posted regarding your progress. Have your surgeons not said that it is perhaps possible to remove at least part of the liver/tumors rather than doing a complete transplant? If you want to chat to me personally about my 'rupture' experience, let me know. Thankfully both of you have already been diagnosed and you can turn to your surgeon should you experience any symptoms that are concerning. My problem was that when the rupture occured I went to 3 hospitals in two days before they finally were able to diagnose me and perform a lifesaving embolisation. You will not have this problem as your doc already knows what is going on. Please contact me directly on ninette at mwebbiz dot co dot za should you wish to chat further. My prayers are with you both.

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  22. Hi, I'm 36 and 3 months ago discovered I had what they thought was hcc and is 9cm. This was discovered believe it or not because I went to the doctors for a routine pill check and he was concerned how much alcohol I consumed therefore arranged an ultrasound. Since then they have found another tumour 1.5cm. Ive had all different scans but the latest one which was an ultrasound scan on the 20th December showed that these were not malignant tumours. How they found this out was by injecting bubbles into the area and the longer the bubbles were active and the way they reacted showed that infact these tumours are adenomas caused through taking the pill. I am now waiting for my next appointment which is a laparoscopy then after that it will be surgery. I would like to thank this site for the information as I have found it very helpful and also its amazing to share my experience up to now with you. Jane

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    1. Dear Jane, thanks so much for sharing your story. Please let us know how your surgery goes. I am also interested in how they diagnosed you (the injecting of bubbles). I will ask my liver surgeon about this. My liver surgeon told me that he does not recommend biopsy because it could risk rupture. Please keep in touch and my prayers are with you although I know you will be fine. I've read that where resection is possible, it seems to be the best choice as you want to be sure to avoid a rupture. Please if you have not already, select to 'follow' this blog so that we can all start keeping track of each other. Thanks!

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  23. Hepatobiliary disease, although rare, may present during pregnancy with potential complications for mother and fetus. We present two cases of choledochal cysts and one case of a hepatic adenoma diagnosed in gravid patients. All three patients had acute events or failed medical management and were successfully treated with open resection, excision, or reconstruction during the second or third trimesters of pregnancy without requiring blood transfusions or tocolytic therapy. Although conservative treatment may be indicated in select patients due to the risk of underlying disease, we recommend surgical treatment preferably in the second trimester. With diligent intra- and postoperative management, pregnant patients can safely proceed with major hepatobiliary surgery

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  24. Hi all, before I share my story I wanted to make sure this site is still active. I hope it is!

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    1. Hi AnonApr15, yes, this site is still active although I don't get to it as much as I would like to!! Please feel free to share and take care, Ninette

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  25. Hi all
    i have just found this site and find it really good that there is other people sharing there story's about there HA. I got told i have a 4 cm HA just over a year ago. I am 18 now but was 17 at the time. I am slightly puzzled as reading this it is clear that oral contraceptives play a very big part in the cause of the HA. I have never took the oral contraceptive or any form of contraceptive. Would like to hear of someone else who has had the same situation as myself.

    It does not cause me any pain or discomfort and i do sometimes forget it is there until it has been mentioned. I will be having yearly scan just to monitor it but at the moment it looks well.

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    1. Hi Anon1May2013, regarding your question, have you had any other hormonal imbalance issues and/or have you been on any other medication for any other issue?

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  26. Hi I'm so glad I found this blog ! I am also south African and after about 2 years of intensive tests and scans because of ntermittent Gastric issues , headaches , fatigue , menstrual issues I finally got diagnosed with mutliple hepatic adenomas after we did a laprascopic liver biopsy . I have at least 10 - 15 of the darn things all between 5 ml and 3 cm . I havconstant discomfort under my right rib cage and am living in complete fear of a rupture . Every time I feel a slight pain I panic . Like tonight . it's 1 am and I can't sleep because of an ache in my stomach and back. I am a single mom of a 2 year old and I live and work in Bali where the medical system is not to good . I'm so scared of having a rupture and them not being able to deal with it properly and worried no one will be around to take care of my little one should something go wrong.

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  27. Ps I took birthcontrol for 3 months when I was 18 and never again after that and now I am 32 so it can't be from that . I also have Poly cystic ovary syndrome . The only long term contraceptive I was ever on was the mirena iud which has a tiny bit of hormones in it . Progesterone I believe . I have been doing a lot of research and am trying to see I anything links pcos and ha . The only thing that comes up is glycogen storage disease or insulin resistance . I'm going to see a endocrinologist in Singapore next week to see if these things may me hormone related or linked to a sugar or insulin issue . My doctor who did my laprascopy and diagnosed me with multiple HAs thinks I should stop analyzing so much and seems happy to say they are from birth control but that just can't be the case with me because of no prolonged us . I want to try get to the bottom of it to see if I can make any lifestyle changes that can help avoid growth and rupture . I'm I going crazy looking so far into this ?

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    1. Dear Chimene, thanks so much for your posts and sorry for the late reply. Re your fear of rupture, I can totally relate. I will be doing another post on this soon. I'm not sure if you have signed up yet to follow this blog but please do so that you can get email updates. About your doc saying not to over-analyse, please ignore, it is obvious that you need to get to the bottom of this. I am hearing stories of more girls who were not on pill long or at all who are getting HAs. We need to get to the bottom of it. Will put up a post about this too. Please let me know what the doc in Singapore told you.

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  28. if you exert yourself and be very active, does this increase the chance of rupture? Just wondering as i am an active person with a 3.5cm adenoma

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    1. Dear Anon5Jun2013, I will be putting up a post re my thoughts on this soon. Take care

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  29. Good Queston Anonymous - Im also very active . I used to surf but cant anymore because it hurts to lie on my stomach. I also do kickboxing and am very worried I might get bumped or kicked in the side or over exert myself and cause a rupture. I have multiple adenomas - at least 10 , the biggest of which is only 2cm though. There is so little info out there on adenomas and Ive seen 2 different specialists and they both so there is very little known about them and very little advise besides watch and wait , or cut if they get big... frustrating!

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    1. Hey , It's nice to get a reply and especially of someone who is going through the same thing. Yes the wait and watch is all i was told. i have only ever had one consultation about my HA in which that was when i was told i had one, and was no told too much about it just that they would watch it, they gave me no information as in will it grow? if so how fast. They did not inform me about the risk of rupture.This is slightly annoying to the fact how little information you are given. If anyone can give us some information regarding being active and the risk of rupture? I think not only myself but many others would be grateful.

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  30. I have had 3 HAs for 8 years monitored by MRI every year -I have an appointment with surgeon 11/7/2013 to discuss 3options 1. Continue with monitoring annually 2. Resection 3. Transplant if resection requires as all 3HAs in same area and don't know if I could function with remaining part of liver. Currently experiencing discomfort behind right rib cage and not sleeping well. :(

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    1. Can i ask?
      Have your HA'S increased in size over the 8 years?
      Did you take any oral contraceptives? Or did appear through no reason?
      It is good to see everyone's experiences as an individual :)

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    2. Dear Anon9July2013, How did the visit with your surgeon go? I'm sorry to hear you are struggling with sleep and pain. Is the pain constant or when you are lying is a specific position? How big are your HAs? In which part of the liver are they located? Have they changed in size over the last 8 years or remained the same? Do you suffer from other symptoms that impact your quality of life? Hope to hear from you soon.

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  31. Do HA grow? or do they stay the same size?

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  32. Hi all, I also have been dx via MRI with 5 HA's the biggest of which was 5cm. We've been waiting 6 months (I came of oral contraceptive after 15 years in January this year) to try and find out whats happening and the biggest has now shrunk to 3cm. The problem is my pains are terrible along my right side and the right side of my back. I'm taking opiate painkillers and they've prescribed morphine but still I get the pains. Some days I can't even wash up the dishes! What I have noticed over the last few months is that they seem to be linked somehow to my periods, as the week before and during the pains are terrible, but the other 2 - 3 weeks they aren't that bad really. Has anyone else noticed this with theirs, or does anyone know why this might be? I know that HA are linked to hormones but just wondering if this is significant, as the surgeon is reluctant to do surgery even though I am in so much pain and I don't really want to be on these meds for another 6 months as it must be causing damage to my liver.

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  33. The crushed chest is the esophageal varices that occur when the portal vein is affected by the tumor. You'd feel nauseous, superficial veins glowing just under your skin (most visible on your arms, near your wrist and forearm. I'm having the same issues with mine, and it took a long time before I got that part diagnosed.

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    1. Dear 24Jul2013Anon, thanks for this additional information. I've googled the terms you mentioned and would like to find out more info about esophageal varices as all I could find as the description was that they are veins in the esophagus. What is the link with the portal vein and the crushing pain in chest. I had crushing pain twice last year and it scared the living daylights out of me. Did all sorts of tests and the docs couldn't figure it out. If you have more literature on this, please send it to me. Thanks again for your posts, much appreciated, Ninette

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    2. From what I could find via literature, as the hepatic pressure increases in the liver (portal hypertension) it can back up into the esophageal veins which are under lower pressure, causing the "crush" sensation. For me, it was like the devil reached out and grabbed my skin like a T-shirt, then tightly twisted the T-shirt. Lasts about 10 minutes, but if you stay calm you can still breathe and it will subside. This is not the same as a panic attack or GERD attack, which although these can be very painful, they do not make you feel like your esophagus is literally crushed. Fortunately, the crushing subsides and then you're chest is just extremely sore for the day. These were the first signs of something wrong for me.

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  34. Additionally, the tumors can cause cholestasis to occur, so if you are having major digestive trouble even though they say it's not related to your HA, then have them check your gallbladder function via CCK test. CCK tests are not 100% accurate, but can help diagnose problems. The best test is to eat a fatty meal, like Gorgonzola cheesy olive oiled pasta meal, then wait for about an hour or two. If the pain gets excruciating, it's your gallbladder (this also works for steak/hamburger, any "complicated" digestion). If you feel better when you don't eat, or if you only eat simple foods like chicken broth...it's your gallbladder, which may have been compromised by the tumor(s).

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  35. Oh jeez... so good to hear other people are going through the same thing. I have 10 small adenomas - all under 2 cm but have pain under my right rib cage constantlym hard to sleep on that side , I get nauseous frequently and also feellike my hand are swollen and the veins tend to pop out like they are swollen and wrists and hands hurt all the time! My doctors seem to feel my symptoms are unrelated and franky I think most of them think Im a hypochondriac . I was never on birth control besides maybe 3 months when I was 18 so 15 yrs ago so mine can be from that. I do however have really irregular periods and I have PCOS. Recent hormone test only showed slightly raised testorone ( was 58 when is should be under 55 so not majorly high but higher than normal) .... Im on wait and watch but its super annoying because I live in Bali where the medical is terrible and if I did have a rupture I doubt they would know what to do! Going home back to South Africa in 11 weeks which will take a bit of the worry and stress off . I just hate the fact that I am in pain every day , I love working out and am trying to loose some weight but I worry that if I work out to hard I could cause a rupture .... you just feel like a ticking time bomb all the time! Any suggestions from anyone regarding excercise? Could vigorous excercise cause a rupture if adenomas are small? Or too much cardio pushing to much blood to the liver? Im also so sensitive to medicine and alcohol now, and fatty foods and sugar... it all sucks if someone could garuntee me they could cut them all out and I would feel better then I would do it but with 10 of the darn things thats not the answer. Has anyone done RFA on small adenomas? I hear that is an option for adenomas under 4 cm? Sorry lots of questiosn

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    1. Chimene, when you come to South Africa, thought to give you this info. I was taken care of at The Cape Town University Academic Private Hospital, liver specialists: Prof Krige, Prof Benningfield and one other doctor (can't remember his name right now). They might be able to provide you with a second opinion. In light of your information re blood type, and bad hospitals where you live, I can imagine you must be seriously considering a move. It would be good to use your trip to SA to find out as much as you can to help guide you in your decision with the way forward. For now, would it do any good for you to visit your local hospital to find out about their professionals so that if you are in an emergency situation, they will immediately know what to look for and maybe you can also have with you the contact details of liver surgeons with backgrown experience to help them if you have to be admitted for a rupture? Take care.

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    2. HI Ninnette, actually I have been researching doctors in SA as I wanted to get a second opinion from someone with more in depth interest in liver and liver tumours and Dr Kriege was the name that came up . I have contacted UCT liver research centre to try and get an email address for DR Kriege to try and set up an appointment for when I get back to SA. I really want to see if he can use RFA to ablate some of the larger tumours . I have six months til I have to be back in Bali again but have decided to base myself back in SA and only travel out for business when I need to for a few weeks at a time so I can be more focused on my health and my diet as I am pretty sure what has caused this has something to do with diet , pollution and hormones in food as well as insulin resistance because I keep seeing posts that people have both HA and PCOS ... also PCOS is also one of the main reasons people go on BCP .... so there must be some kind of link between the insulin/ hormone imbalance that causes these things whether on BC or not ! Do you by any chance have an email address for DR Kreigs office ?

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  36. Hi everyone,

    sorry to hear about all your difficult stories.
    I am in the same boat. I live in Switzerland, am 41, 3 kids, and had a big liver bleed end of January 2013 from a more than 10 cm large liver adenoma. I went into hospital because of strong and accute pain on the right side around the rib cage and thought I might have gall stones... After a CT it was clear I had 1 large adenoma and various small adenomas across the whole liver. The doctors were about to start an embolisation to stop the bleeding in the liver, but luckily the bleeding started to cease itself. As I still had no real clue of what was happening and what the medical situation was, I was quite shocked when the doctors started mentioning a possible liver transplant. Furthermore I belong to the few women that have never ever taken any hormones for birth control as I have a thrombosis on the portal vein of the liver and am at risk for further blood clotting. So basically with the chance of 1 to 1 mio. - I should have won the lottery instead :-)
    According to the top liver surgeons here I have following options: cut out the big adenoma (is a major operation and only a temporary solution as the adenomas will grow again, especially as I have a lot of other small lesions growing into adenomas), leaving the adenomas as they are now is not an option because of the bleeding risk and they could turn into cancer, so I am bascially left with the option of having a liver transplant, which is the best longterm solution in my case and is easier as long as otherwise I am in good health. Regarding some of the questions I was told to keep up moderate exercise (but no horse riding, no self defence classes, no boxing, or anything where you might get a blow on your liver). But workouts, walking, running, golf etc. should be no problem. My pain is not too bad from the adenomas, I feel the big adenoma when I laugh, when I lie in bed or breath in deeply, this is because it presses towards the lungs. When I had the bleeding and for quite a time I needed very strong pain medication, so I know the pain can be horrible to put up with.
    I have been on the liver transplant list since February 2013 and expect to get a new liver within around 4 - 6 months from now.
    Has anyone of you been suggested to have a liver transplant ? Do you know of anyone who has been through a liver transplant due to mulitple adenomas ?

    Please keep on posting :-) It is great to share the experience as it is difficult to find these few people with the rare disease.

    Take care !

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    1. HI there , so I am one of the people like you , who has multiple adenomas - recent laprascopy showed around 10 of the things scattered throughout my liver.The biggest of which is a little over 2cm. I too have not been on contraceptives for long periods of time. I am 32 and only took them for about 3 months when I was 18. Had to come off them because they made me extremely moody and a little crazy. LOL.
      I am a single mom of a very active 2 year old and I also like to exercise so Im in the gym every other day. I eat super healthy , Ive stopped drinking and I take very little medication. The only problem is I have constant pain under my right rib cage . I take panadol only when I cant bare it anymore. Its worst in the evenings when I lie down and want to sleep I cant get comfortable. I live in Bali where the medicine is not great . There are no liver specialists , only internists who deal with general internal organs. I have to fly out to Singapore once every 3 months for follow ups . So far my last to ultrasounds seem quite stable with little growth but I am very paranoid that I will do something that will cause a bleed and that they wont know what to do in the hospitals here. Also I am O- blood type and they dont keep O- blood on hand in the blood bank here because it is rare and 99% of Asian people are + so if I had to have a bleeding situation and needed blood I would be pretty stuffed! Ive been in quite a lot of pain the last 2 weeks so am going to Singapore for a MRI in 2 weeks time .Fingers crossed its all ok but it is really making me anxious , so much so that I am considering moving back to South Africa and giving up my business here so I can be nearer to better medical care. My doctor did mention that because I have so many , if they grown that resection wouldnt really be an option , that it would b more likely I would need a transplant. I really dont want to go through more surgery. I wish there was a way we could just make them disappear with a good healthy diet or detox or something!!!! Im researched so much and tried to figure out what could have caused them to try and see if I can alter something in my lifestyle to try and make the regress or disappear because I know people like you and I that have not been on cotraceptives are extremely rare to present with this . Adenomatosis is the term for multiple adenomas and they are most commonly found in people with glycogen storage disease which is a type of insulin resisitence from what I understand. I am trying to figure out if mine may be linked to a sugar or insulin issue as I also have Poly Cystic Ovaries which are similarly linked to insulin resisitence.... Im wondering if cutting sugar from my diet completely , including alcohol and all complex carbohydrates might help? I would love to hear more of your story and how you go with the next chapter , if you end up doing the liver transplant etc . Chimene

      Delete
    2. Hi 26Jul2013Anon. Thanks so much for sharing your story. You mention that your liver surgeons say that to cut out the big HA is only temp solution because the other smaller ones will continue to grow. How do they know the others will continue to grow? How big are the others? As for the big one, do you know if perhaps it is so big due partially to the bleed or was the bleed external (i.e. not into the tumour itself)? Mine was big because when it ruptured it bled into itself and after the bleeding stopped it continued to shrink due to the disolving/processing of all that old blood out of my system. It must be such a hard thing to face when doc says transplant is best option. If my surgeon told me that, because it is such a big deal, I would consult with one or two other independent liver surgeons to get a second and possibly third opinion to assist me in making up my mind regarding what to do. I wish you strength in which ever route you decide to take and please keep us posted.

      Delete
  37. Do HA increase in size naturally or can they stay the same size forever

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    Replies
    1. Hi, I think they can grow or stay the same size forever or even shrink, but not very often do they disappear.

      Even if they do not grow, there is still the risk that they might turn cancerous.

      kind regards

      Delete
    2. Thank you for your reply. So that means that can keep changing in size such as one time they may increase then maybe a few years later the size has decreased etc?
      Do they only increase if your on the contraceptive pill? in which if you do not take any form they will decrease or stay the same size forever.
      Would really like to know this one as my HA is a reasonable size and i do not want it to grow. I like my body how it is and would be devastated if i was told i would need surgery which would result in a huge scar. I know your health is important but i am only young and if i can maintain the size of my HA by avoiding absolutely anything that may cause an increase in size i will. Does anyone know of anything that may make this happen or is there anything that may shrink the HA ? Could having a very healthy diet decrease it or would there be no change?. Sorry if this question sounds stupid but these are things i have wanted to ask but never had the chance too.

      Delete
    3. Hi there,

      unfortunately I cannot give you an answer to all your questions. I think it is very unpredictable, what will occur.
      Following links might give you some medical insight:


      Maybe these articles will help you find some answers. I guess each specialist and sugeon will give you an individual answer depending on the whole situation. It seems there is also not too much collected data up to now to have clear procedures on how to handle adenomas.

      I was told, that the chance of my adenomas (possibly to a portal vein thrombosis - I never was on the contaceptive pill) disappearing was near to zero. But there are always miracles. I am sure that a healthy diet (not too much fat and sugar) will help anyway. I would assume that if your adenomas have come from the contraceptive pill you might be lucky that the adenomas could reduce over time.

      Hope this helps.
      kind regards

      Delete
    4. sorry the links did not appear:
      another try:

      www.uptodate.com/contents/hepatic-adenoma

      and

      www.ncbi.nlm.nih.gov/pmc/articles/PMC2023950/

      Delete
    5. Thank you for all your information. This is very kind of yourself and much appreciated!
      My adenoma also was not caused by the contraceptive pill as i have never taken it

      Delete
  38. So that means that they can keep changing in size such as one time they may increase then maybe a few years later the size has decreased etc?
    Do they only increase if your on the contraceptive pill? in which if you do not take any form they will decrease or stay the same size forever.
    Would really like to know this one as my HA is a reasonable size and i do not want it to grow. I like my body how it is and would be devastated if i was told i would need surgery which would result in a huge scar. I know your health is important but i am only young and if i can maintain the size of my HA by avoiding absolutely anything that may cause an increase in size i will. Does anyone know of anything that may make this happen or is there anything that may shrink the HA ? Could having a very healthy diet decrease it or would there be no change?. Sorry if this question sounds stupid but these are things i have wanted to ask but never had the chance too.

    ReplyDelete
  39. I have heard that there is a link between Diabetes Mellitus and HepaticAdenoma. Is this evidence true?

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    Replies
    1. Ive been trying to find more research on the link between multiple adenomas and sugar levels as I got diagnoses with at least 10 small adenomas all ranging from 0.5cm - 2cm. I only took birth control pills for 3 months around 15 years ago. I did however have an IUD for 5 years which contained projesterone - not estrogen. So I am trying to figure out if something else caused my HAs...Gylcogen storage disease and Diabetes Mellitus has been mentioned a few times in some of the sites I have looked at and all seem to say that multiple adenomas are usually shown in these cases rather than one or two in the case of long term birth control users. I have PCOS ( poly cyctic ovary syndrome) which is linked to insulin resistance ... so I am wondering if the two are linked . Maybe I have a mild form of glycogen storage disease or some sort of sugar inbalance that has caused this. I posed the question to my doctor and he is " listen dont look to much into this , its cause by birth control , just dont take birth control pills and please done get pregnant and you should be fine" when I told him " I never took birth control , so why did I get this things , could they be linked to blood sugar and possibly be the same thing that causes my PCOS " he turned around and said " I dont know anything about PCOS as Im not a gynae/ obstetrician" which is really annoying - I wish doctors would just look at your whole body and see if something is off that is causing these things to happen rather than just look at their specialty and make an assumption and let you go. I am going to see a doctor who is a diagnostics expert "Dr House" type doctor when I go back to South Africa in Oct ( I live in Bali) and hopefully he will look at the whole picture and try and figure out what caused these things so I can hopefully keep them under control with diet and lifestyle rather than having to go under the knife ! I think these things are so rare there is so little research on them , Doctors just dont know what to do - wait and watch , wait for a rupture or cut .... all have different opinions

      Delete
  40. Does anyone know the likelihood of a Adenoma becoming Malignant? I have been reading through this Forum and was not aware that they turned Malignant. I was told they may rupture?

    Unhappy that i have not been informed of this and i am glad there is forum's just like this one!

    ReplyDelete
    Replies
    1. Hi there,

      I have several HA and have been reading loads of medical reports on HA. It is difficult to find very exact numbers, but on an average I found that they turn malignant in 4 - 10% of the cases.

      have a nice day.

      Delete
    2. Sorry you are one of the few people I have heard mention you have multiple HA . How long ago were you diagnosed? Have there been many changes in size ?I have around 10 from 0.5cm - 2cm. I have significant pain under my ribs everyday . Worse when I am in bed at night and constant feeling of fullness under my ribs . Hard to sleep on that side. Im constantly paranoid about a rupture because I live in a very 3rd world country with not the greatest medical system. My doctors say watch and wait and if they get bigger we consider doing something about it but as there are multiple all across the liver the cant resection. Have you considered RFA? Has anyone on this forum had RFA ? Radio frequency ablation? Is it worth looking into ? At least for the bigger ones?

      Delete
    3. Hi Chimene

      thanks for your infos. All these stories help us not to feel so alone. I was diagnosed last January with strong pain. (I did not know I had adenomas). The largest adenoma is around 8 cm and was bleeding, therefore the pain. I also have about 3 adenomas around 2 cm and it seems a lot of tiny lesions which indicate the start of further adenomas.
      Obviously the adenomas grew within around 4 years. In 2009 I had my last ultrasound of the liver and they mentioned some tiny tiny strange areas in the liver, but obviously did not think that these were an issue, because they thought they were small "fat-lesions".
      I had radio stereo tactical treatment (unfortunately I don't know if it is the same as RFA), which does not make the adenomas disappear, but causes the tissue to scar and therefore delay any next spontaneous bleedings.
      As a resection of the liver is no real valid option -because of the number of adenomas, I am on the waiting list for a liver transplant.

      I trust the decision of my surgeons, as they spent a long time discussing pro and con of the liver transplantation. (of course I took a while to come to terms with this outlook....). One of the main reasons is that around 40 - 60 % of larger adenomas will bleed again. It is a question of time. And the surgeons said that a ruptured liver or a big bleed is very difficult emergency surgery.

      I try to look on the bright side, sometimes it is easy and sometimes not. ;-))

      kind regards

      Delete
    4. Hello! Thank you for putting your experience on here i appreciate it and will most! Was you on the contraceptive pill or have they developed on there own?
      4 years ago was those(fat) lesions in the same place as the adenoma now or have the adenoma developed with these areas still there?

      Delete
    5. Hi there,

      no I was never on the contraceptive pill !

      The specialists assume the adenomas developped because I have a thrombosis on the portal vein of the liver - meaning that maybe the normal methabolisms in the liver are therefore disturbed...

      Regarding your question about the lesions. I do not know for certain. I assume the 3 adenomas which are now 3 cm were developped from the fat lesions and the status now is, that a lot more tiny lesions can be seen in the liver, so it is quite sure that they are the beginning of further adenomas.

      Hope this helps.

      kind regards

      Delete
  41. Have any pf your Adenoma's grown and if so in what space of time?

    ReplyDelete
  42. Here's the story that my Fiancee' has been going through.

    7/17 she was at work and had terrible chest pain. she had no idea what was going on and her co workers called an ambulance for her. I was called and arrived at her job. She sat for 2.5 hours in an ER and was not seen.

    We were able to call a doctor and drove from the ER, 15 miles away to our home town to see a doctor. Her symptoms started to subside. The doctor gave her a pain killer and thought it was her gallbladder.

    7/18 she woke up and felt okay still in some pain. She got an ultrasound and her gallbladder and other organs were fine but they found 2 huge masses and smaller lesions in her liver. We cried.

    7/19 she got an MRI done and called a gastro-specialist. The MRI revealed a hemorrhaged lesion of 10cm and another lesion on the left lobe 7cm that has potential to rupture. They also found other 6cm and 5cm lesions as well as other 2cm and smaller lesions. Probably close to about 15 all in all.
    We cried some more and I felt terrible and still do.

    7/21 she got an appointment to see a gastro specialist who told her to take two supplements that aid the liver cells in detoxing and breaking down toxins:

    NAC (N - ACETYL CYSTEINE) and Alpha Lipoic Acid.

    He also suggested that she stop eating all carbohydrates and limit her intake of carbs to only Whole grains and less that 20g a day total. No white flour carbs.

    Also told her to eat vegetables good for the liver like Kale, cabbage, broccoli, etc etc.. lean meats like chicken , turkey, lamb, limit red meat intake and seafood low in mercury like shrimp and scallops (6oz/week only twice a month so not too much seafood)

    He said eat only vegetables and fruits that are organic so the liver doesn't have to focus to hard on pesticides and herbicides.

    He tested twice for Hepatitis B and C, Hcc and other tumor related illness but still believed Birth control was the culprit.

    All test came back normal. Her alpha feto levels were normal and cea levels were normal. Her white blood cell count was back to normal and she is actually losing alot of excess weight.

    He decided not to biopsy because they could rupture and said to wait 30 days for another MRI.

    We decided to thank him and keep him up to date with progress but decided that 30 days was far too long especially when another one could rupture.

    8/2 we finally got an appointment with a Liver center in Chicago, IL called the Walter Payton Liver Center. After many phone calls and fighting with insurance they decided she was a good candidate for treatment and analyses.

    Her appointment is 8/14 where they will further the opinion and diagnosis of Hepatic Andenoma's and try to rule out Focal nodular hyperplasia as well since some tumors had a central scar on initial MRI.

    I will try to post an update when I can.

    Please listen to this bloggers advice and get yourself tested. Take these supplements and get eating right. We thought we ate well enough. But apparently refined sugar like white sugar, brown sugar and sugar subsitutes all have a tremndous impact on the liver as well as all white flour products. She ahs been eating only hwole grains and lots of kale salads.

    I can tell you she is feeling back to normal. As an overweight woman, she always felt something was wrong but was told many times it was because of her Birth control. Well she never got off the Birth Control because her doctor told her she needed it to control her menstrual cycle and pain. She was also diagnosed with PCOS(Poly Cystic Ovarian Syndrome) and was born in Colombia before moving to the United states at age 3.

    It also doesn't help if you are on Birth control and drinking and eating out of plastics. BPA has been linked to numerous hormonal problems and even though it isn't the cause of HA, it sure is not good when trying to get healthy.

    ReplyDelete
    Replies
    1. Dear 12Aug2013Anon, thanks for sharing your fiance's story. Sorry to hear about this difficult situation you face. Please let us know how the appointment went at the Liver Centre. It is always good to get a second opinion.

      Delete
    2. Wow Im so sorry to hear about your fiances troubles. I too was slightly overweight and since being diagnosed with multiple adenomas in Feb this year I have last 10kgs ( 22 pounds) and am now within normal weight range . My adenomas are small - all under 2.5 cm at the moment but I am in quite a lot of pain and am constantly fearful of rupture because I live in a 3rd world country ( indonesia) where the medical system is not great . Im heading back to my home country in October for 6 months and am hoping I am a candidare for RFA treatment on the larger tumours . For the smaller ones I am hoping my lifestyle changes may help shrink or dissolve them. Im trying to cut out all sugar, alcohol , I quit smoking, I only have olive oil , no other fats , mainly lean meats , lots and veggies... and I am going to pursue some chinese medical techniques when I get home to try and help detox my liver. Fingers crossed it all works! Im a single mom of a 2 yr old and really need to be in top health to take care of her and work hard for us both to survive!

      Delete
    3. Thank you so much for your post. I have always been a heavy set woman and always knew that there was something wrong. My hepatic adenoma was first found by accident when I was 18 years old but with no insurance and being a college student at the time the general hospital here said not to worry about it. I had not started taking birth control yet when they found it. A few months later I started on BC pills for about a year on and off because they would always make me sick. I never knew why. I was ultimately diagnosed with PCOS at 20 yrs old and told I needed to have a hysterectomy at the same general hospital where they had first found my adenoma. After discussing with my parents and my gynecologist I decided to get back on BC to help regulate me and help with my cysts. I only lasted about 6 months before getting off it again. I ended up getting married at 22 and never used BC and was never able to get pregnant. When I was 29 I was rushed to hospital with severe right abdominal pain and blurred vision and weakness and I was admitted for a week because they thought it had ruptured. Thank god it had not but I was told I needed to have an AFP drawn every six months to insure it was not cancer and an MRI annually because it had grown significantly and now was on my upper right and left lobe on my liver. I lost my insurance about two years ago and have been unable to keep up with the blood work and MRIs. For the past month I have been feeling really bad with sudden onset of pain on my right side, blurry vision, headaches, sudden moments of elevated blood pressure (probably due to my pain), nausea and severe exhaustion. I started feeling all of these symptoms at the same time. I am afraid that it is a sign that something is going terribly wrong . But since financially I can't afford to see my GI doctor or my endocrinologist much less get an MRI I don't know what to do. I have no insurance so I feel so helpless. I know my body and I know there is something wrong. I sometimes wonder if my weight and hormone problems could all be solved if I just had this thing removed and allowed my liver to grow back healthier and then maybe I could finally be normal. I was told my PCOS is the reason I was never able to get pregnant when I was married. But when I think about it I think instead of blaming my PCOS for my adenoma..... I think it is more likely that my adenoma is the cause for my PCOS since the liver has such an impact on my hormones maybe if God willing I can ever afford to get it removed my Testosterone will finally go down and I can one day have a baby. I am already 31 now so I am running out of time.....it is just such a hard journey. I get so down on my bad days. I am thankful to have supportive family and friends. I am more thankful that I found this blog which has made me feel less alone. Thanks for letting me vent... God bless you all...

      Delete
  43. Id also like to add to my previous comment that, we are 27. We have been together for 11 years. Even thought she has large HA's and smaller ones we are positive that Her youth will be on her side.

    With youth aside, I feel confident for all of you that positive thinking will help you. IT is a hard tough journey and if you feel like your facing it alone, do not be afraid people are here to help.

    We have been staying positive and we look to the little things like small weight decreases, and being creative in the kitchen. We worry that another HA may rupture but you cant live life worrying all the time. The best thing to do is Know the symptoms and be near a phone or people who can get you to a hospital.

    It would seem like the doctors would rather have the HAs rupture them re-sect, but it is probably for the best.

    It should be noted that the Liver is the only organ that can regenerate itself and heal itself. Even if yours did not form from Birth Control that's okay. try to find out what is creating these extra masses and limit that intake. If you cant please look up the supplements NAC (twice a day morning and night) and Alpha lipoic acid (once a day).

    The liver can be transplanted and the longest liver tranplantees have lived 30+ years because most liver transplants are done to people over age 40. So even if you are past your prime do not think your life is over. Learn from this experience and understand that there are millions of people who die of very bad illness and disease everyday who never make it to there teens.

    Please be positive.

    ReplyDelete
  44. I am really sorry for the horrible experience you have gone through with your fiance. I can understand it must be terrible hearing you have a adenoma never mind being told there is multiple. I am very glad you have shared your DR's view in realation to keeping healthy. I think this is very helpful. How is your fiance doing in regards to her Adenoma's? Are they stable in terms of growth?

    ReplyDelete
  45. I have had my yearly scan and shows no sign of change. Could not be happier. It shows they mostly not increase in size and often decrease

    ReplyDelete
  46. After reading through some of the stories it is apparent that there is belief that Adenomas shrink or even go away with a healthier lifestyle. Is this true? My adenoma has shrunk slightly in size in which i also believe this is due to myself eating more healthy. Does this mean if i keep going with the good healthy eating it will go away?

    ReplyDelete
  47. Ninnette If you could possibly email me any of the Doctors details that you have at UCTPAH I would greatly appreciate it - harperchimene@gmail.com

    ReplyDelete
  48. Does Alcohol have any effect on adenoma?

    ReplyDelete
  49. My Hepatic Adenoma has gone!!!!...Was told 3 years ago i have a very small Adenoma (1cm), I have been trying to be as healthy as possible for the past 3 years. My Adenoma was not caused by the contraceptive pill as i have never taken it or any other form of contraception. I am also only 17. But yes had my scan and was told that basically it has shrunk to a size..that basically is not worth sizing

    ReplyDelete
  50. Anony thats excellent news! Gosh i have been trying to be super healthy too staying of the sugar, alcohol etc , Ive lost 10 kgs , been going to the gym etc Last scan they could find 8 or the 12 adenomas that they saw on my laprascopy , the biggest had grown ever so slightly by about 0.5cm . Then I had a few stressful weeks with back to back events (Im an event planner) and ate badly , drank a few glasses of wine , didnt sleep enough , then had to fly from Bali to Cape Town ( 32 hour trek) with my 2 year old! Now Im back in Cape Town and have been having really sharp stabbing pains under my ribcage near the bottom of my right breast . The pain is so bad when it comes it feels like a needle being driven through my side right through to my back and makes me gasp for breath. I had a ultrasound 2 months ago and dont want to be a hypochondriac and rush off to emergency but I am really worried about one of the adenomas bleeding or possibly rupturing... should I be heading to the ER? Or just wait it out and see if it goes away ? Today is particularly bad. BTW Ninette - I have emailed Dr Krige numerous times and no response . I did get through to UCT Private hospital today and they said to call back monday and they could see if they can help me get an appt with Dr Saunderop the hepatologist or Prof Krige as soon as possible. Im happy Im back in SA though , sure beats the medical care in Bali, I hope they can help me here . Hoping to look into RFA for the 3 biggest adenomas ( 1.5cm. 1.8cm and 2,7cm) then all hopefully through diet shrink the rest . Also no birth control history - I am convinced that these things are not only linked to birth control that they also have something to do with blood sugar and insulin issues which are also hormonal issues. Im hoping to find some answers soon and praying this damn pain will go away !

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  51. Hi Chimene. What is very unusual is that i believe mine was caused also due to link between hormone levels and insulin. I am type 1 diabetic in which this is controlled by insulin. When my Adenoma was diagnosed it was the year i neglected to look after myself in regards to my blood sugar levels. This resulted in having constant high readings and changes in hormones and also electrolytes. I believe that due to the insulin connection and the very high glucose levels in which this may have a link( not sure ) with glycogen levels was the cause of my Adenoma. Since the diagnosis i have had better control with my blood glucose levels in which on the first scan it showed no growth previous the first then 4 months later and decrease in size was noted. Due to this i know longer need any more follow ups in regards to my Adenoma for the rest of my furture. I think a forum should be made to the possible cause being insulin glucose related as there is not much on the web about this connection. Hope this is helpful?

    ReplyDelete
  52. Wow ! Thank you ! My doctors have told me that I am reading to much into it and doing to much research on the internet . To be honest I think it is THEM not doing enough research because this is such a rare condition. I am 100% convinced that somewhere along the line in the last 10 yrs my body started struggling to process insulin properly , I at too much sugar ( always been a chocoholic!) , drank too much alcohol ( worked in nightclubs for years ) and my hormones went off balance. Now I dont drink besides the very occasional glass of wine or champagne and I try to stay off the sugars and carbs ( thought I sometimes have weak moments where I just NEED to have a chocolate) Ive got back in the gym ( which helps anyone with sugar issues as it kicks you body into energy burning mode and helps you process sugars better ) and have lost 10kgs in the past 6 months so I am now within "normal" weight range where I was slightly overweight before. My cholestrol has also dropped to within normal range so I am making all the positive changes needed to be a healthy person . My last scan was 3 months ago and they could still see 8 adenomas on the ultrasound and my largest one had grown from 2cm to 2.5cm so I have a follow up with a the same surgeon as Ninette - prof Krige at UCT hospital cape town this week. Im guessing he will send me off for an MRI and we will chat about whether he thinks its worth looking into surgery or RFA. I have actually read articles about people with glycogen storage disease that have been put on a very precise diet ( eating every 4 hours and keeping sugar levels consistent ) and their tumours and shrunk and disappeared. What baffles me is the unwillingness of any of these doctors to do more research into WHY we are getting these things and that none of them belive they are related to anything but birth control!

    ReplyDelete
  53. Hope this site continues to be active. I am very interested in hearing how some of you are doing, particularly these recent posts as I was diagnosed with HAs back in November of 2013. I too have diabetes and have never been on birth control. Type 2, well managed and only on Metphormin for three years. For many years I was lifestyle managed. How has the diet and healthy living helped you, Chimene? I have eight adenomas, one an FNH, largest of the adenomas is 2.4 cm. I will go back in 6 months for an MRI. Mine were found incidently from a CT scan. Following that, they did an enhanced CT and a liver biopsy. I am now off alcohol (was never a heavy drinker, but drank socially) so as not to further stress the liver. I am of normal weight and am a pretty healthy eatter, but have definitely tweeked some things. Going through menopause, so think that's on my side with the low estrogen. Would love to hear how you non-birth control users, insulin-connected folks are doing and what you're doing.

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  54. Hello, My wife (27 yrs old) had pancreatitis and had an MRI where they also found 3 masses on her liver (biggest one is 2 inches) They are unsure if they are HA or FNH tumors. After many MRI’s and even a nuclear imaging test they still cant decide. The MRI people think it’s an FNH and th nuclear imaging people think its HA. My wife did use contraceptives for a while, at least 5-8 years I’d say, maybe more. So now they gave us 2 options, one is get a biopsy to hopefully determine it for once, and if it was HA they would most likely remove them (pending that they are all close together) Or we could wait another 4-6 months and get more imaging to see if they have changed at all. The stress lately has been killing us so we just opted to get the biopsy. Has anyone been in this uncertain situation before on whether or not is HA? Has anyone had a biopsy? Also if it is HA can they just remove them and that will be it? Nothing has ruptured or anything. Thanks everyone!

    ReplyDelete
    Replies
    1. Hi Nick,

      Don't get stressed out. I was in the same situation as yours. Mine got ruptured. I got my biopsy done and they found mine was HAs. I have more than 20 adenomas. Since your wife has only 3 of them. They might resect them and everything will be alright.

      Delete
  55. Discovered two HA in 12/13 during an ER visit for epigastric pain. CT scan found masses. Had embolization 3/5/14. Follow up MRI 4/10/14 but Penn Interventional Radiologist is confident embolization was 100% successful. Has anyone had difficulty or experienced pain even two weeks post embolization? I'm finding I'm unable to wear a bra (pain is exacerbating in epigastric region) and am supposed to return to work in a few days. Philadelphia, PA, USA

    ReplyDelete
  56. thank you so much for your blog...great support group...just what I need. I was on the Pill for nearly 16 years, without any problems. Only in the last year of taking the pill, I developed symptoms...starting off with discomfort under rib cage, bloating, IBS, fatigue and irregular bleeding. It took 4 doctors and nearly a year to get the right diagnosis (only by chance). In 2012 I had a 7cm tumour resected. The recovery was a struggle at times. I still have one small adenoma, which now appears to have grown. Just waiting to hear back from my doctor. I am so scared to face another operation, but then again...it might be better to get rid of it-otherwise I will never be able to relax.

    ReplyDelete
  57. About 10 months ago, I had massive pain in my upper abdomen. My doctor referred me for an ultrasound to see if I had gall stones. Luckily I didn't, but they did find a shadow on my liver. I was referred for an MRI to check this out. It was supposed to be an urgent MRI, but the hospital lost my referral. After lots of chasing, I finally got my appointment date 2-3 weeks later.

    The MRI results showed multiple small blushes on my liver and one larger one, around 1.1x2.2cm. They said it was a haemangioma and nothing to worry about unless it was growing. I would need another follow-up MRI in 6 months' time. I asked my doctor if the haemangioma was causing the pain I was experiencing but apparently it wasn't large enough, so he said the pain must be referred pain from my bad back.

    Six months later, I had to keep chasing for my MRI because my doctor didn't fill in the referral paperwork correctly. I was put on a 6-week waiting list as they said it wasn't an urgent referral.

    On the day of my scan, the hospital phoned and said they would need to reschedule my appointment, because they'd had too many emergencies in that day. I am not confrontational and normally I would’ve just said ok, but I felt like enough was enough and I pointed out that my appointment was already 2 months’ overdue. I really felt that I needed the MRI on that day, and that I shouldn't wait any longer, because I didn't think my doctor could be right about the referred back pain - my pain is below my rib cage, and when I bend forward it feels like something is being squashed and can really hurt a lot.


    The results came back inconclusive. The tumour had grown by 50% over 8 months, to 2.2x3.3cm. It didn’t look like a haemangioma as it showed evidence of scarring, so could be an FNH, but these do not usually grow. FNH can be confused with adenoma, which DO grow. The hospital had to have a meeting with their interdisciplinary team to work out what it was.

    All the signs were pointing to an adenoma, which have a small but real risk of turning malignant. Also, pregnancy is not recommended. I am 29; I do not yet have children but I do want them in a few years. There is also a risk of haemorrhage and internal bleeding.

    I had my meeting with the specialist on Tuesday, who said I have a hepatic adenoma, which is linked to long-term use of the contraceptive pill. I have been on the pill since I was 15, due to massive period pains when I was a teenager. The surgeon has advised me to immediately stop taking the pill and I will go back for another MRI in 3 months’ time.

    There is a small chance the adenoma will regress in size, but if it hasn't, or if it is still growing, I will need a liver resection to remove it. The surgeon confirmed I should definitely not get pregnant whilst I have the adenoma, as it would grow and there’s a high risk that it would rupture and cause internal bleeding. However, once the adenoma is removed I will be able to have children, which is a huge relief.

    I’m really worried about not being on my pill, in case all the pain comes back. But I know my long-term health is more important. I never knew that this could be a side-effect, and I don't think enough people know about it. I have to accept that I will most probably need surgery in a few months' time. I've read that there can be lots of complications. I'm scared it will haemorrhage in the meantime.

    I am so glad I didn't let them reschedule my second MRI. At least now I know, and I know that the adenoma IS causing the pain and they are taking the problem seriously now.

    It’s so frustrating that this could have been diagnosed 8 months ago. I could have stopped taking my pill then, and maybe the adenoma would have disappeared by now, or I could have already recovered from the surgery. Now I have yet another wait. I'm so angry that they got the diagnosis wrong, and that I've had to be in pain all these months when I needn't have been.

    Amy.

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  58. Hi,

    It's been really nice reading everyone's stories and learning about others experiences with hepatic adenomas. I have just recently been diagnosed with a 2.5cmx2.5cm adenoma. It was first found when I had a chest CT done for pneumonia back in March (2014) and at the time was 1.9cms I have had two MRIs done now that have confirmed the adenoma. I am concerned with how fast it has grown. I am 21 years old and have been on oral contraceptives for about 6 years now and so I know that is a very high probability for the cause of the adenoma. My gastroenterologist wants to just do another MRI in 6 months, but as I said i'm worried with how fast it has grown already in less than 3 months. I am making an appointment for a second opinion tomorrow on what I should do. Obviously this is a very nerve-wracking and scary time for me and so as I said reading all of your stories and everything that you all have been through has really given me hope that I won't suffer horribly for the rest of me life. Thank you all.

    Julia

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  59. Hi Everyone, I havent been back on this site for a while. So Ninette I eventually saw professer Krige and UCT Private Hospital and he looked over all my files and actually played the whole thing down . Told me that I shouldnt be feeling any pain in my liver that the liver was not a sensitive organ and that my adenomas were basically like 12 peas and possibly 1 grape squashed into a loaf of bread . He said the liver doestn even know they are there.... which I beg to differ as I have had extreme discomfort for over 4 years now all on the right rib cage and middle of the ribs where they connect . Im in pain daily , always tired , eyes blur easily and generally just not feeling well and of the hundreds of tests they have done they say its is not liver related but they cant find anything else wrong with me besides elevated Ige levels which they have put down to allergies , chronic mouth ulcers which no one can figure out why I get and these multiple adenomas . Ptrof krige has said to have a scan every 6 months . My scan in January was very promising in cape town at medi clinic they said that they could see multiple lesion but could only see around 8 tiny ones all under 1cm and 1 slightly larger one which was about 1.6cm . This made the largest 1 at least 1 cm smaller than the last scan in July last year . I was so excited because I had worked hard to eat healthy , I had lost a lot of weight and was being quiet active and felt like whatever I was doing had worked . Then I came back to Bali 2 months ago for work and had my follow up scan in Singapore last week and they said that the biggest one was back up to 2.5cm ..... not sure if maybe they are getting bigger when I come to asia . I do feel worse when I am here .Maybe different climate , different food, pollution etc gosh who knows . Basically all the docs have just said keep watching and waiting and if any one them start getting toward the 4cm mark then we would need to think about RFA or some other technic Krige mentioned which he said is now a far more advanced treatment better than RFA . Im still scared of a bleed especially being an active person and living half the year in a very 3rd world country but unfortunately I cant stop my life for these things and fingers crossed so far so good . I just wish I could not have the pain and exhaustion to deal with daily!

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  60. I just had my 6-month follow-up and with an MRI -- my last scan was a CT -- there is no significant change in my adenomas or additions; however, the MRI picked up smaller innumerable adenomas so the diagnosis is hepatic adenomatosis, which, honestly makes me a bit uneasy. The good news is that the blood work, again, was good and no changes in the larger adenomas is good news. My largest adenoma is 3 cm x 1.8 cm. The standard in the Unites States is when they reach greater than 5 cm, surgery is considered, and certainly what your symptoms are and the location. Currently, I am asymtomatic.

    Anyone here have the diagnosis of hepatic adenomatosis -- which means more than 10 -- and have had there condition stabalize? At this point, I do not have to go back for another MRI and blood work for a year.

    Chimene, your adenomas are small, which is good. It's my understanding that they become concerning for rupture at over 5 cm. I also understand your frustration in understanding why you are feeling the way you do.

    My next appointment will be with a gastro guy to address non-alcholic liver disease. Have you ever had a biopsy? That's where that part of the diagnosis orginated for me. Good luck to you!

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  61. HI ,
    I have had both needle biopsy and laprascopic surgery with multiple biopsies. They found 12 adenomas which were visible under direct vision throughout the liver both on the surface and internally . The original needle biopsy showed fatty liver tissue and didnt even pick up the adenomas . We think they actually missed the tumours completely and it was horrible experience!!!! having long needles stuck through your rib cage while you are wide awake and only slightly numb on the skin is not fun! and the fact that they missed was even more annoying , hence opting for the laprascopy when more popped up on a ultrasound and they still werent sure what they were . So yes I have fatty liver tissue and adenomatosis and my largest is just a little smaller than yours 2x1.6 . I unfortunately do have symptoms though which docs say are unrelated ... though i do believe that whatever is causing my symptoms ( exhaustion, pain , dizzyness, nauseau etc ) could very well be the same reason I am getting he tumours in the first place . I have done a lot of reading on several studies of adenomas and adenomatosis and it seems the common links are hormones ( whether they are from the pill or not) and either insulin resisitence or diabetes .... it seems people with hormone related issues like PCOS and a sugar issues are most likely to get them. So my theory is - control your sugar intake and insulin levels, get your hormones balanced , loose weight , get off any hormone therapy or pills ... and maybe you can slow down the process of the adenomas growing or multiplying or even get them to regress?

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  62. Hi all :)
    I was really interested to only just find this blog...Very summarised, my story is as follows:
    - no symptoms other than really tight neck, shoulder and back muscles
    - keeled over in extreme pain one lunchtime at work
    - rushed to emergency where I sat for 5 hours only to be told they thought it was an infected gall bladder
    - went home as I felt a little better but still in pain
    - the next day went for an ultrasound
    -immediately after, on the way to the dr, I was suddenly in even more excruciating pain than the day prior
    - I managed (I really don't know how) to continue to drive to the doctor's surgery only to collapse in the waiting room
    - they gave me a morphine shot and thought it was appendicitis
    - went in an ambulance to the hospital, had a scan - morphine had blocked much of the pain
    - that evening was confronted by the liver specialist and told that I had a tumor the size of a baby's head on my liver and that it had severely ruptured and that I had to stay as still as possible and that if I didn't I could die (will never forget those words!)
    - I had over 50% of my liver out including my gall bladder
    - 2 weeks in hospital and then another 5 at home recovering plus a 25cm scar (I call it my "shark bite"!)
    Scans a couple of months later showed that a large percentage of my liver had already grown back.

    I had been on the pill for 20 years and my specialist said this was the most likely reason for the tumor and that it could have been growing there for years. So hard though to believe that I had virtually no symptoms from something so, SO big! Until it ruptured that is.

    I have since been back for scans as that was 3 years ago and have not to date had any recurrence.

    Thank you all for sharing your stories :) I, like many of you, still find it unbelievable that so many doctors continue to prescribe the pill without even touching on this risk of hepatic adenomas. In fact, a couple of doctors I've been to since weren't even aware of the risk!

    My main reason for this post is to see if anyone has had gone through IVF following the successful removal of an adenoma? I have been to my fertility specialist who referred me to another liver specialist and they said they didn't have any history of someone in my situation but believe that given it is all gone I shouldn't have a problem. Because the tumor was supposedly induced by hormones from the contraceptive pill, I am very hesitant bout the IVF process, ie. the taking of large doses of hormones.

    If anyone out there has any history that could help me get some more facts I would really REALLY appreciate it!!



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  63. Hi all, just stumbled across this blog while researching in preparation for scheduling surgery for my HA. I'm 37 and was on BCP for almost 20 years to prevent recurrent ovarian cysts. Totally worked, I had no ovarian cysts while I was on it...then this. Mine is totally asymptomatic, only turned up during a CT scan for pain that turned out to be a labral tear in my right hip. So far I've had 4 MRI's, 3 appts with GI specialist who then referred me to a surgical specialist and one appt w/ him. He recommends surgery to resect/ remove as it's 8cm and very easy to get to- sorta dangling off the right lobe of the liver. I've only been off the pill for 5 months now, and he says it can take 3-6 months for it to react to the cessastion of the BCP, so next month I have a final MRI to see if it's regressed at all. *Fingers crossed* that it does, at least a little, because apparently right now it's resting against my gallbladder so the surgeon says my gallbladder would almost certainly be removed along with the HA and that does not please me. Sure, I know that not having a gallbladder isn't life threatening, but it does have a function and I'd sure like to keep mine!

    I can't help wondering how much of the rareness of this condition is false, since it's so often asymptomatic UNTIL it ruptures. For all we know 70% of women might be walking around with these potential time bombs but never get diagnosed because they don't have a random abdominal scan or any symptoms. And from what I understand, the chances of rupture are actually quite low (~10%) if you remove pregnancy and pregancy-related hormone fluctuation from the mix.

    I don't have any plans on becoming pregnant in the future (and never have been), so choosing surgery isn't 100% clear cut for me. If I did want to have children, surgeon says yes yes yes: remove the HA, because all those hormones increase likelihood of rupture by about 300%.

    Regardless of the relatively low risk, I'd much rather chance planned surgery now (when I have health insurance) with a chosen specialist surgeon than roll the dice and hope I don't end up in the ER needing to have a spontaneous rupture embolized under less that ideal circumstance by whoever happens to be on call.

    I wonder a LOT about dealing with menopause down the line. Until this year, I had always assumed I'd be on the pill straight thru till my reproductive system effectively shut down. Surgeon told me that there are no cases of women who have had their HA surgically removed getting one later in life as a result of HRT during menopause...but I wonder if that's just because all the case evidence is so relatively new (like, from the last 10 years).

    I would assume that assurance from the surgeon would also apply to IVF if you had a single HA removed...but then I would also be a little wary due to the lack of supporting data either way. Maybe regular MRI's during the IVF to make sure nothing new is forming?

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  64. Also, I was reassured by the liver specialist that alchohol and dietary consumption has zero effect on HA's. Obviously I don't drink to excess, but I don't feel guilty at all about an occasional cocktail or beer. He doesn't recommend any special supplements or exercise restrictions.

    I was terrified of it rupturing until I got gut-punched by a 3 yo nephew and then 2 days later one of my cats launched off my belly right above where the HA is. I feel like if neither of those ruptured it, what could?

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  65. Thanks Erin_obscure :) I hadn't event thought about HRT and menopause.... hmmm
    Yes, scans during pregnancy sound like a very logical precaution. I will keep things updated on this site if I progress down the IVF track. Good luck with your journey.

    Regarding the rupturing, I had been on paracetamol and codeine (Panadeine forte) for approx. 3 weeks for a pinched nerve in my back right before mine ruptured and I can't help think that perhaps that put extra strain on my liver? Along with a large "party" weekend right before also. Just a thought.

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  66. Please can someone tell me how to follow this thread as just found while googling my condition...again. thanks

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  67. maggie.danhakl@healthline.comNovember 2, 2014 at 3:10 PM

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