What is Focal Nodular Hyperplasia?

I had to have 70 percent of my liver removed in 2002 due to FNH. They had to leave 2 good size tumors that are inoperable on my hepatic vein. They took my gallbladder out at the same time, which they told me was protocol (gallbladder was fine), and I have had ongoing problems ever since. I have many bouts of stabbing/strangulating pain under my ribs right at the site of my surgery.

I do my best to keep up on blood tests and keeping an eye on my liver for changes, but most primary care physicians are not helpful and seem to be scared to mess with me since my history that began with my resection. I feel for anyone who has to go through this.

I'm a 35 year old female and I was diagnosed with FNH in 2003. The mass was a size of baseball on my hepatic artery. I had major surgery to removed it and 25 percent of my liver. Two years later I had to remove my gallbladder.

It's been 11 years and since then, I've had yearly check ups. All results always come back normal. However, I experience severe liver spasms that last from an hour to three hours. It feels like a rubber band around my abdomen that always leads to severe pain with feeling of vomiting. My right shoulder always hurts and my right arm goes numb.

My doctors don't know what to say and I feel like they don't want to give me any more attention since my results always come back normal. Has anybody else had these symptoms? Please advise.

My 15 year old son went to the doctor for dizziness. He had blood drawn and the next thing I knew, because of his high bilirubin levels, he was sent for an ultrasound. A mass was found and at first the radiologist said it was an adenoma, but the next group of doctors that read the mri he had next said it was focal nodular hyperplasia.

In talking with the surgeon, he suggested it be removed because of the uncertainty of what it was, but when we got to the hospital my son was afraid and did not want to have the surgery. He just wanted to wait and watch it. I asked the nurses just to give him a sedative until the surgery and they asked him and he said no, that he wanted to talk to the doctor.

Long story short, they decided not to remove it despite my insistence. When did they start listening to a 15 year old and not to the parent? There is no family history of this and I wanted it out because that same surgeon told me there was no way to tell 100 percent what it was without taking it out!

For those of you in Washington state who are going through all of the pain and sickness that go hand in hand with FNH, get in touch with Dr. Hart at the Swedish Medical Center. He is the director of organ transplant. He was the only doctor who believed me when I told him how sick I was.

He got me right in to surgery and treated me with the utmost respect. Never once did he tell me to live with the pain like many of the other doctors I went to did. My advice to everyone is keep fighting for your care and treatment. You have to be your own advocate.

At the age of 26, my very large FNH landed me in the ER and through a long series of frustrating and heartbreaking appointments. Most doctors didn’t take me seriously. It took me six months to get into the hands of a doctor who really treated FNH with the urgency it needs.

Don’t live in pain, friends. When I woke up in the hospital bed, I immediately felt better than I had in years. I lost 10 percent of my liver but regained my life. Almost a year after surgery, I’m still going strong. Above all else, everyone keep your head up, know you’re not alone, and don’t accept "just learn to live with it."

I just wanted to add I'm a 30 year old female also just confirmed to have a large mass in my liver being FNH. This was shocking to me as I'm extremely healthy, have never taken birth control, never smoked, never drink and don’t eat wheat, dairy or sugar. I immediately went to a naturopath once I found out I had FNH. What I found out made complete sense. My illoceocal valve (between the large and small intestine) has been stuck open, and because of that I’ve had a major toxic overload in my liver as the junk from the large intestine has been putrefying in my system. This is a very common thing in most people, which no one realizes due to a lack of calcium, magnesium, Vitamin D and stress.

I've been on a program of boosting this valve/muscle, cleaning out my small intestine and since doing it, any pain I have felt had started to disappear. Both doctors I've seen either first said I needed to have my liver removed or else to not worry about it come back in a year. There is no reason as to why it could happen and they didn’t know what to change in my diet or how to help the pain! This makes me very angry.

If I had no idea about this valve and kept on going, I can’t imagine how much more infected my body would have become and how many more tumors could start. I seriously recommend getting the ileocecal valve checked out if you have this problem, because it s something often overlooked and it could be as simple as getting it fixed to work properly so that the liver can continue to filter out junk on a much better level. I'm determined that this is going to help shrink my tumor. I will keep you all posted how it goes!

I am so glad I have read this. My daughter, who is 15, had her gallbladder removed in May 2011 because of gallstones. For the last month she has been complaining of nausea and abdominal pain.

After two weeks of scans and scopes, the specialist has said that she has a small tumor called FNH and it is nothing to worry about. According to him, this does not cause pain and nausea and now that I am reading this I am feeling so relieved. I am seeing another specialist on Monday, but at least now I am more prepared if he tells me otherwise.

I would love to contact you My story is very much the same and I live in Boston.

@anon338531: I feel the same way.

I am a 36 year old female and I found out I had a mass on my liver when they were performing gastric bypass on me in 2005. At that point, there was only one and 6.25 cm in size. My gastric bypass doctor was going to cut it out, but didn't feel comfortable doing this because it was covered in veins. I was taking birth control pills at the time and switched to the depo provera because I was told that sometimes birth control is not as effective anymore after that kind of surgery and that deop is more effective. So immediately after surgery, I switched to depo and have been on it ever since.

I have had back pain ever since my surgery and thought that it was from that until last August 2012. I went to the ER with extremely bad back pain, bloating in my ribs and what felt like labor pains in my back. They did another scan and found out that I have gone from one lesion to now having seven. The first one has now grown from 6.25 to 8.3 cm and I have another that is a 4.3 cm and I think the third is like 2.3 cm and the rest are small. I was referred to a digestive specialist in November 2012 who told me that the extremely excruciating back pain was because I needed to build my back muscles and as far as the lesions, that I needed to stop my birth control immediately. This was before he saw my MRI results.

So I left it at that. He made it sound so cut and dried that I've continued to deal with the pain, but no matter what I do, it comes on sitting, standing, sleeping – it doesn't matter. It will wake me in the middle of the night like someone has been boxing me in my right side of my back all night. I get pain in my abdomen from where my liver starts on left side and it radiates to the right where my biggest tumor is. I feel this fullness sometimes so much that I feel like I have a full term baby stuck in the right side of my body between my rib cage and hip. I feel sick on and off and I'm bloating sometimes so bad that I will look pregnant. I feel uncomfortable on the right side under my ribs and it's just annoying. I'm tired all the time and I am so tired of it.

The surgeon I was referred to isn't trying to do surgery and I am so frustrated. I can't take the pain anymore. I thought I was the only one until I started researching this after getting a letter from the the digestive disease doctor I saw a year ago. After a whole almost year he sends a letter saying that after reviewing my MRI, I need a liver biopsy. His medical assistant forgot to send me the letter back in November 2012 and I just received it May 2013. I was just like what?

I started looking it up and that's how I found all of you here. This is not rare and I would like to know if anyone has tried to go after these drug companies or if anyone is interested. I have a daughter who is on birth control now and I'm scared for her. I don't want her to end up like me. This is not rare. There is so many of us out here and they're not listening and not educated on what is truly going on here and they won't, until we as women speak up about these pills and what they are doing to us.

I am so angry. The only warning that was listed on my depo that they highlighted as important was the risk of bone loss, which is very, very minor compared to what is happening to my liver right now. If we just sit here and just keep posting, our voices are not really being heard. I want to speak up for myself and my two daughters. We have to do something. I plan on it and if any of you need my help or want to speak out, post here.

My afp is 6.1, which is borderline. I just had a biopsy few days ago, which I didn't want to do because of the way the procedure was done and the pain after they were finished. I spoke to my surgeon, who just told me that depending on the results of the biopsy, he may not operate which is bull. I can't keep going through this pain and he doesn't think my liver is causing it, so he is making all these other excuses of what it might be, like gallbladder. He checked it and it's normal and my kidneys are normal. Now he is suggesting ulcers, which they would have seen along time ago. There is so much more to my story, it's crazy. He says that he would like to keep monitoring me and continue blood work because he doesn't think it's causing me pain. When I told him about the info on the internet, he got really nasty about it. I guess it's because he is misinformed and doesn't know what he is talking about.

We can make a difference if we work together. So now I am back a square one trying to find a good doctor to understand what the hell I am going through.

I was diagnosed with a FNH in June of 2012 after having horrible RUQ pain while visiting relatives in Ohio. My husband took me to Mercy hospital and they proceeded with some routine labs and a ultrasound of the abdomen. My symptoms were the same that I had right before I had my gallbladder removed some years back. It was thought maybe I had some stones that were in my ducts but the ultrasound showed nothing. My LFTS were very elevated and my white blood cell count was elevated so they wanted to keep me overnight. That overnight turned into seven days.

They ordered a HIDA scan, even though my gallbladder had been removed. They wanted to see how everything was emptying. I had some delay in my liver. They ended up doing another ultrasound and found the mass. They were unsure what kind of mass that it was and did not want to biopsy the mass before I made my long trip home because of the chance of bleeding. They did a needle liver biopsy that showed some tissue changes. But the doctor said that that would be normal. He didn't want me to leave until he had answers, but being so far from home and my kids, I was ready to go.

My enzymes were still elevated, but my blood cell count was back to normal. They told me this mass could be cancer, FNH or an adenoma. My new husband and I were trying to have a baby and were advised to put that on hold. When we returned home, I contacted my gastroenterologist and he had me do a series of labs and a CT. The radiologist could not determine what it was so when I went back to the gastro doctor, he had me do another CT, this time with Eovist. They were still unsure.

They did know one thing though, and that was it was sitting on my portal vein and it was very large. It was decided because we wanted to have a baby that they would do a laparoscopic biopsy. I was told the risk because of where it was located but decided to proceed. They determined it is a FNH. They told me that if it grows even a mm they would want to remove it and will have to remove three-fourths of my liver. They told me that they would like me to have a CT every year or every two years and that it is O.K. for us to start a family.

I am concerned about all of this and I am afraid if I do get pregnant it will compress my vein and mess with my blood flow to my liver. I have not had the pain since then but I am always tired, forgetful, my ears turn red, I feel flustered a lot and sometimes I just don't feel right. I find all of your post very interesting but it also makes me very concerned. Would love any advice! Thanks!

I reported late last year (in September 2012) about my FNH. I am happy to say after pushing for months for someone to really listen to me about my symptoms (I was having nausea and bloating feeling on right side), and after having everyone tell me that it's FNH and that it isn't a big deal and finding that my nausea was getting much worse to the point that I required nausea medication that I had to take several times a day, that I am finally free of all of it!

After two surgical consults (with the same surgeon), I had 1/4 of my liver and gall bladder removed in December 2012. Ever since my surgery, my nausea has disappeared. The doctors were all surprised because they didn't believe my nausea was associated with the FNH. So my advice to all of you who are experiencing the same thing is to keep pushing! When I found out about my FNH, no one wanted to do anything. Everyone brushed it off and ignored my symptoms. It wasn't until I finally told one of the doctors that I couldn't stay off my birth control pills for too long because I have been having issues with my hormone levels (they wanted me to stop taking the pill because they thought that was causing my nausea), but as soon as I mentioned that I have been experiencing problems with hormones levels for quite some time, it was then that they decided to have me have a second surgical consult and the next thing I knew, I was being scheduled for surgery.

@lilkim, post 20: I also have hyperthyroidism with a small goiter and FNH. I cannot understand why the only information I have on FNH is from the internet. Doctors have brushed me off for a follow up MRI in 12 months. God only knows what that will show.

I am 35 years old and a lump appeared on my right side under my rib area so I got an ultrasound. They said it was a muscle, but wanted me to get a CT scan. I got the CT scan and five lesions showed on my liver; the lump on my side was just a muscle.

They ordered a stat MRI and they said the lesions are FNH. For the past six months or so, I've been getting these dizzy waves and wake up during the night and I am sweating. I have been on birth control since I was 14 years old. I am so scared.

My doctor said there's nothing to worry about; just carry on life as normal. Should I go off the birth control pill? Are the dizzy feelings and insomnia from this?

I am 29 years old and after going to the doctor complaining of pain when I eat, they did studies and I was told I needed my gallbladder removed. Shortly after it was removed, I had the same symptoms and that's when they found a mass on my liver. I was never really told what it was, but that they were sure it was not cancer.

I became pregnant with my now 3 month old son and was monitored the whole pregnancy for growth of it. I had my son in August and in September, I was sent for a CTC scan where they found two more tumors and referred me to the University of Washington. They told me that my largest tumor was FNH and could not be removed because it is close to my three main veins. They want me to follow up in six months to check the other two tumors. But I also have pain on my right side and in my right shoulder blade. I also get real hot and red after eating as well as a painful stomachache. If anyone has found anything that helps with the pain, please share.

I am 27 and have a lesion on my liver they say it isn't anything to be concerned with, however I am in a lot of pain on my right side and so nauseated. I have been on medication for the nausea for over a year and a half and it is getting worse.

The lesion is said to be nothing but it is growing. They only recommend an MRI in six months for a follow up! Why are they not listening to my concerns? Living with chronic nausea and pain is absolutely miserable.

I am a 39 year old female and I was diagnosed with FNH in September 2012. My mass is 11x11x10cm (quite large). I have seen a couple of doctors regarding my FNH and was told not to worry about it, that it wasn't serious (I was pretty much blown off). I have been suffering with nausea since the pregnancy of my son (I was nauseated throughout the whole pregnancy)and he is now three years old. The nausea seems to be getting worse just in the last month.

In October, I saw a liver surgeon who chose not to remove the mass at this time and said to just watch it and for me to have another MRI in six months. It's frustrating to me because I can't live with this nausea anymore, not to mention this ballooning feeling I get quite frequently in my liver.

I am happy to read that I am not the only person who suffers from nausea due to the FNH. When I was first seen in Hepatology, they didn't seem to think my nausea was associated with the FNH, but now the more posts I read, it is clear to me that it is a great possibility that my nausea is associated with the FNH.

I just found out I have FNH. I'm 54 and the tumor is 5cm by 3.5cm. They aren't doing anything about it except doing another MRI in six months. I only have mild pain in that area, but they found it because I have severe pain in my lower right stomach area and my acid reflux has gotten much worse.

I was on birth control for years and am now on HRT. I feel I should get off it. Anyone know if you can go cold turkey or slowly? How come we have never heard of this problem with taking hormones before?

I had my gallbladder removed during the major liver resection. Please see post 9 - I had a liver resection where I had 75 percent of my liver removed. My gallbladder just happened to be in the way so they removed it at the same time. I hope that the ginger worked for you.

In my anon280438/post25, I stated that in April 2012 I went to see an new dermatologist. I actually went to see a new hepatologist.

@Rosie2010: Thank you for the kind note you wrote. No, I was not told that the tumors would grow back and no I have not had a liver resection. Thanks so much for the suggestions of ginger for my nausea. I am going shopping tomorrow!

May I ask why you had your gallbladder removed? I also have to be careful with what I eat now. Good luck to you also.

I was so sad to read your story. As a fellow sufferer, my heart goes out to you. What a terrible time you have been through. It is so sad that all this has been brought on from using the birth control pill. You are right in saying that not a great deal is known about this condition.

My condition was not diagnosed for an extremely long time. I think that, because it's quite rare, it gets overlooked and gets mistaken for other things. Were you told that they would grow back? Did you have a liver resection? Your symptoms definitely sound like they have returned.

I found that eating ginger biscuits, drinking ginger beer or eating anything ginger helped with the nausea. I know it's not very healthy but what have we got to loose at this stage? It also seemed to help with the crazy heartburn that happens sometimes. I noticed that after my gallbladder was removed, I can no longer eat spicy food or a lot of food that I used to be able to eat.

I hope that you get some joy from the doctors who did your liver surgery. Good luck and I hope you get some answers.

I was 40 years old this past February. In December 2007, I was diagnosed with FHN after going through every test imaginable and in May of 2008, I had five benign tumors removed from my liver. My symptoms were pain RHS, abdominal bloating, inflammatory bowel issues, fatigue, hot flashes, my ears turning red and most of all, uncontrollable nausea. I mean, nausea every day, all day! Does anyone have uncontrollable nausea or nausea like this with FNH?

Also in 2005, I had my gallbladder removed and in October of 2008 I had a complete hysterectomy with stage 2 endometriosis. In January 2012 I had stage 3 precancerous cells removed from my vaginal walls. I have been told that all of this is due to taking birth control. I was taking Ortho Novum 777.

After having the tumors removed from my liver and my hysterectomy, I felt good again. Unfortunately that only lasted from May of 2008 until about January of 2011. That is when I started to slowly get the nausea back. At first it was once in a while, and I actually thought that I was having heartburn. A few months into 2011, I realized that my nausea was coming back. Then slowly the pain started again in my RHS and soon followed all of my original symptoms/issues. I went to see another doctor (at my normal hospital) in October of 2011 and was diagnosed with NASH, and how this was diagnosed my mom and I are still trying to figure out. I tell the doctor that this is incorrect, that it's FNH, but I am told no, FNH does not cause symptoms like I have. I just leave disgusted.

My mom talked me into going to a different, very good hospital in the state I live in this past April 2012. I saw a new dermatologist, told them all of my past history, had all records sent and told them of my current symptoms. They told me that it wasn't my liver and that I needed to see a gastroenterologist. I have had so many colonoscopies and endoscopes but none of them find anything wrong!

My appointment at the new gastro at this very good hospital in my state is next week and I canceled it. I called and canceled the appointment with the gastro because the MRI I had at this hospital in May shows that I have three tumors on my liver. The doctor I just saw in April and told me that none of my symptoms have anything to do with FHN and has diagnosed the 3 tumors as FNH.

Hello! Listen to your patients; we know our bodies better than you ever will! No doctors really seem to understand this disease and you would think they would listen to and learn from all of us who suffer from FNH.

I am sorry. I just found this site, have read all of your stories and I'm frustrated.

Needless to say, I have had my current MRI sent to the surgeon who did my surgery in 2008 and am waiting to hear from him. I know that I have a 50/50 chance of having to go back in for another surgery and that just stinks!

I understand the pain, suffering and frustration that FNH has brought into each of your lives.

I am 26 years old and was recently (in the last year) diagnosed with FNH. It was discovered due to pain I had been having on the right side of my abdomen. I was told, pretty clearly, that the pain was not a symptom but the pain is localized exactly where the growth sits on my liver. They have also said that since it has not grown in the last six months (it is 5.5 CM) they will not remove it. They will not allow me to take any form of birth control or hormones either. Anyone else in a similar boat?

I'm 37 years old and was diagnosed with FNH after an MRI following my hysterectomy for ovarian cancer in 2008. At that time, I was told it was due to the birth control/estrogen, but they continued to prescribe hormone replacement since I had my ovaries removed. I've been told that they shouldn't grow without estrogen feed, which makes menopause suck since I haven't taken it because of these lesions.

I had a liver biopsy which is not conclusive of FNH per pathology, but my MD is saying it is FNH.

I am feeling frustrated, annoyed and bewildered about what to do. Side note: I had my gallbladder removed in 2001-I've had what I thought were "phantom pains" since then that weren't excruciating but bothersome. Looks like it was because of the lesions. I wasn't aware that they can grow back if they were surgically removed.

I am sorry to hear about your sister. I am in exactly the same position as her. I too had 75 percent removed and all have grown back. I am now back up to 10 tumors and this condition is ruining my life. On doing some research I think that this started off in us as a congenital disease and us being on the pill only made it worse. Have all of hers appeared again after having them resected. I am very sad as I was not told this could happen. I haven't had a second surgery yet, but have been told that a possible liver transplant may be needed eventually.

I wish your sister luck and wish I could give her a big hug and best wishes with dealing with this illness that not much is known about.

My sister had three tumors, and had 75 percent of her liver removed dour years ago. She had symptoms of nausea after eating, fatigue, dizziness. Well today we found out today the tumors are back! This is very sickening to my family, knowing what we all went through before.

Has anyone had a second surgery? No one ever told us that these tumors would grow back. The doctor said the tumors were probably from birth control pills, and she stopped taking them four years ago. She is 27, and wants to start a family soon. The doctor said before the first surgery that with these tumors in, having children is risky, and also if she were ever in an accident there is an issue of hemorrhaging. So scary! Any feedback is greatly appreciated.

I am 37 recently diagnosed with FNH. I was told it could have been caused by the pill. I was only on the pill for four years but only two of them were consecutive years. The doctors also discovered masses on my ovary and thyroid. Do any of you with FNH have a thyroid issue? The tests show I have hyperthyroidism. I did not have any of these issues two years ago when I had my third pregnancy. As of now the doctors are saying the masses are not related. It seems odd that my body would be producing random masses.

I am a high mileage runner and healthy eater, so I should not have liver issues. Nor am I a big drinker.

I am 33 years old with a six year old son and a four year old daughter. In March they found a mass on my liver and said they could not rule out malignancy. I have been a nurse for 13 years and this scared the crap out of me! Two weeks later I had an MRI which said the same. Two weeks after that I had a biopsy. Still probably FNH, but cannot rule out Adenoma. How the hell is this supposed to be a definitive, comforting finale?

In May they sent me for another ultrasound and it has grown. My doctor spoke with a surgeon who suggested that I wait three months and repeat the ultrasound. If it has grown or pain increases they will do a resection. Well, since the first test I have been awakened at night a few times with the worst pain I can describe! It is a pain like someone is stabbing me and ripping out my insides from under my right rib to the middle of my upper abdomen under my sternum. The pain under the right rib is usually on a daily basis, and now, I might add, is constantly there and more of a pressure. I have had shortness of breath, inflammatory bowel syndrome, chest pain and abdominal bloating all of my life! Since having my children, I have had trouble with mental concentration, chronic fatigue, facial flushing, ears turn red and hot flashes, weak spells, dizziness and about 15 years ago I was diagnosed with Reactive Hypoglycemia.

Now the last two weeks pain is worse. Nausea with occasional vomiting, weakness cold sweats and diarrhea have controlled my life! What the hell? I am starting to feel like a mental case. I feel like everyone thinks I am a whining baby and never think I feel good. I feel like I want to cry all the time because I know no one wants to hear me complain constantly so I don't. I can't keep this inside any more. I am fixing to explode!

I have a very sick aunt who needs me to care for her right now, an uncle who needs the emotional strong niece I have always been for him and a grandmother who I am caring for a lot now too. Everyone keeps saying how strong of a person I am and how much they admire me for that but the truth is I am scared out of my mind! All I want to do is cry and be comforted for once. As I nurse you are taught to be strong, be the shoulder be the caregiver. For once, I would like to be the one on the receiving end. I have a lot of family I could talk to but they are empathetic. No one who isn't experiencing a situation like this isn't or cannot be sympathetic.

I am angry, mostly. Scared. I sit and look at my babies and pray to God everything turns out OK for them in the long run. I pray for them. I pray they never remember a time when mommy was sick. I want to be healthy and feel good for them. I know this was too long and drawn out but even if no one reads it, I feel a little relieved to have let it out – for once! Sincerely, in need of a hug.

I am a 41 year old female and was diagnosed with FNH about 18 months ago. I have not ask any questions as yet as I was waiting for a follow up CT scan. I have three on my liver one at 90mm, 25mm and 18mm. The two small ones have gotten smaller, but my liver doctor said that they do not shrink. Can anyone tell me if this is right?

I am 39 and have just had liver surgery for a large FNH. It has now been six months and low and behold am already in pain again under my right rib cage!

Will be having yet another mri sometime. The docs don't seem to understand this condition enough. I have said I think it's grown back. Any advice? Trudy

I am 25 years old and have been living with FNH since I was 16. I was told that it was really rare for a young girl to have the condition and they couldn't determine a reason for why I have it. I was suppose to have surgery when i was 19, but they delayed it because they said that it was too risky. They gave me a 50 percent chance of it being successful. I have worried about this condition now for over nine years and continually do not feel well.

I was also told I'm anemic and they cannot determine why either. No doctor can tell me what would happen if I'm pregnant, and i want to have a family. Has anyone had a child while having a FNH?

@Momochan26: I am sorry to hear about your condition. I too, suffer from dizzy spells and find that I get extremely tired. I wad also diagnosed with FNH and had major surgery to remove 75 percent of my liver. Since the op in 2008 all the tumours have now grown back.

I totally disagree with your doctors when they say these tumours do not affect your body. Mine all grew very large and they were affecting my other internal organs. I felt very tight around my rib cage and was also suffering from breathing difficulties. I also suffer from a very sharp pain in my right shoulder blade.

Each country deals with things differently. I am from the United Kingdom and I live in London. I hope your doctors look into your case again. You may be able to get some information from The Royal Free Hospital in UK. Good luck!

I'm a 37 year old female who was diagnosed with FNH in 2010. I don't drink, don't take birth control. My foot massage doctor told me my liver function is abnormal. But the blood test result is normal. Then I forced my family doctor to do ultrasound. Then found out 2.6cm FNH, confirmed by CT scan and MRI_Eviost.

My symptoms are insomnia and fatigue. I can't sleep although I'm very tired, even though no caffeine. Later, it's accompanied by poor stomach digestion.

I'm a 32 year old female and have been diagnosed with FNH as well. I've had abdominal pain for years that I'm fairly sure is related and I have also had fatigue and dizziness that I wonder if it is related? (Anyone else have problems with this?)

Like most of us, I was also given the runaround by the doctors and then they finally found the tumor/mass on my liver after I went to the ER with extreme pain under the right rib and in the appendix area and they gave me a CT scan. I had an MRI to determine that it was FNH. I've read a lot of medical journals and researched a lot online and it seems that the abdominal pain, bloating, fatigue and pain under right rib and shoulder are all related.

The only thing is my doctors keep telling me that FNH never causes symptoms, grows or needs to be checked on again! How do I get them to read up on the facts? I might have to print out some of the medical journals and bring them in and demand they refer me to a liver surgeon or Hematologist. I would love to hear any feedback, suggestions, experiences etc. -Momochan26

@NorthernKat: Thanks for your reply. I am sorry to hear everything that you are going through. Please feel free to ask me any questions. I will try and share my knowledge of our condition with you. There is another website that I visit where people have the same condition as us and people share their experiences.

Life for me has never been the same since finding out about my illness. I was off work for so long that they had to let me go.

Although I have been feeling well recently, I got married one month ago and am in the process of trying to start a family. It's a risky situation and I know what can go wrong. I will let you know how I get on.

Please try not to be scared. I know it's hard but it just puts more stress on your body. I found it really helpful to discuss my illness with somebody who has it and who has had treatment.

Good luck with your CT scans please let me know how you get on. Sending you a hug and hoping things go well.

Kind Regards, Rosie

@Rosie2010: I was the one who posted comment 8 anonymously.

I was taking Triquilar 21 for most of the time I was on the pill but lived overseas for three years and took a different kind then. I can't remember the name. I'm sorry to hear about your condition. Sounds like it's been traumatic.

I went in to the emergency room at the hospital a few weeks ago with a pain in my chest and back. It felt like a band was tightening around my chest with a lot of pressure. Mind you, I'd had drinks the previous two evenings and hadn't eaten properly either night. So I felt really silly that I was going in since I was chalking it up to a hangover.

Once at the hospital, they felt that I was having issues with my gall bladder. The blood work was showing elevated enzymes and the pain was consistent with that. So they ordered an ultrasound for the following day. I went home and came back for that and afterwards they told me that I needed a CT scan. I came in the following day for that and that's when I was told they'd found masses in my liver.

A week and half later I finally saw my family doctor who said that it wasn't cancer, that it was FNH. However, I may still need to have another CT Scan because the original one didn't cover far enough to the right where the tumour is. They said it was 8-12 cm long, in my right lobe and I also have 3 hemangiomas under 1.5 cm in length.

I've had a ton of blood work done and I saw a gastroenterologist yesterday. Both doctors have told me I'm anemic but they don't know why (I've never had heavy periods). And my enzymes are still elevated (or rising, I'm not sure) so if that continues they'll have to take the tumour out.

I'm scared of having surgery. I'm scared I'm not going to be able to have kids. I'm scared that it really is cancer and they just don't know yet (a possibility according to the ge doc). I just feel like they aren't really telling me much yet. I know they don't know either but it's all really frustrating. I have the occasional twinge in my right side but other than that I feel fine (besides the stress that is).

I just don't know what to do with myself. And to add in some more stress, I don't get paid for sick days and the next specialist I need to see is a plane ride away (I live in Canada's far north) so I'm going to have to take time off without pay to see him. And I'm probably going to have to wait for an appointment. I just keep worrying that it is cancer and that time is ticking.

I am sorry to hear about your news. I also suffer from the same condition and have posted on the site a few times. I totally sympathise with you as I remember when I was first told and how upset I was. I too was on the pill for many years as my monthly cycle was very heavy. I was told that it was caused by the pill. I used Dianette and Microgynon. Can I ask what brand you used?

I had 75 percent of my liver resectioned to remove six large tumors and four had to be left in as they were too difficult to remove. Since the surgery they have all grown back and I currently have 10.

Please feel free to ask any questions. I also do not have any children and I am 37 and would like to start a family. I have been warned of the dangers of becoming pregnant. I have been told that the hormones will cause the FNH to grow. I live in London England and know that each country deals with things slightly differently. I met a lady on a site from Canada who has been living with condition for 18 years! What symptoms do you have? How were you diagnosed with the condition?

I found out today that I have FHN. It was a rough week and a half after finding out I have "masses" in my liver to find out that this is what I have. I immediately thought it was cancer and am so relieved it's not.

So far, I'm having further testing and don't know what the plan will be moving forward. Your article gives me some piece of mind. I too, was on birth control for years and wonder if that's what caused it. I'm only 33 years old and have never given birth. Is there any chance this could affect future pregnancies?

I am 25 years old and was just diagnosed with a blood clot in my small intestine and the FNH. They told me birth control probably caused the lesion to grow and said once off birth control it would shrink.

They told me it's benign from looking at it on an mri but did not tell me if it will go away or if there are any risk factors in my future.

I am 34 and just been told I have FNH they say its because of the birth control and I have to stop immediately and get rechecked in three months. but I have been complaining for two years of an ache in my abdomen.

I have just been diagnosed with focal nodular hyperplasia after seeing a new doctor. I have been on pain pills for several years, and it's depressing and embarrassing. It was basically determined the pain was all in my head (and honestly i thought so too, after so long!)

Well, yesterday my new dr is my hero. She found the liver issue and will be setting up surgery, and I'm so excited! when this is all over with i will be able to play with my son without having to "drug up". oh and i don't drink, and don't take birth control, which are the two factors seeming to cause liver issues. I'm 30 years old and it was determined the pregnancy hormones caused it (my son just turned 3).

@Anon141237: Can I ask if you are male or female? Oh, how funny. My doctors accused me of the same thing. I tried to tell them that I didn't drink -- only the odd glass on celebrations. I too, complained for years about my problems and was not diagnosed until it was too late.

How are you being treated? I have a 15-inch scar where they removed 75 percent of my liver. Two years later and I am back to 10 tumors again where they have all grown back! I am very upset as nobody told me that there was a possibility of them even growing back.

I have been complaining about symptoms for years and have been bugging my docs for tests. I just had my tests, and I have FNH. I wish they had listened beforehand, instead of telling me I had been a chronic alcohol abuser! Are you kidding me? I'm young and do not drink to excess every day of the week - let alone often - but have been basically 'cast' by the doctors and told it must be alcohol related for ages! What a pain!

I suffer from Focal Nodular Hyperplasia and would be interested to find out if anybody else suffers from this condition?

I am a 37 year old female who was diagnosed with Focal Nodular Hyperplasia in 2008. I had major surgery a liver resection where they removed 75 percent of my liver. Since having this operation all tumors have now grown back. I have found your article extremely interesting.