Focal Nodular Hyperplasia and Pregnancy - Liver & Pancreas Disorders Message Board

momtocj2003 · 01-14-2006, 12:39 PM

Hello all, I hope I can join you here (not that I want to but by necessity). I saw the awesome large thread below about FNH but I didn't want this to get lost and I'm hoping to kind of renew what's been discussed down there as well. Hopefully you will all come back and keep giving advice for those of us new to this disorder or is it a disease? I don't even know.

Okay here's my story... New's years eve day I went to the local clinic (not my regular doc) for what I thought to be gallbladder issues. The doc thought it was stones and sent me for an u/s which showed a healthy gall bladder but a mass in my liver. So they of course sent me for the CT which came back indeterminate as well as showed a nodule in my right lung that didn't completely show up. By now this goofey doc has me thinking it could be cancer and I'm freaking out rightfully so at the ripe old age of 28. So they sent me for a chest CT and a liver MRI. The chest CT came back with a benign nodule on the lung possibly due to childhood asthma and boughts of pnuemonia/bronchitis, we will repeat the CT in 6 months to make sure it doesn't grow. Now the liver came back of course with FNH. My tumor is small (2 x 2.4 cm) but it must be the position that is causing the pain. It's strange because when I eat fattier foods it hurts worse (which is why I thought gall bladder) and I noticed a big flare up after going back on my birth control pills (we had tried for another baby for 6 months and now decided to wait). So everything I read pointed to this thing being estrogen affected. I finally got into my reg. doc who confirmed this and put me on the progesterone only pill (mini-pill) for now with a referral to a Gastroentorolgist (sp?). Now I'm awaiting the Gastro to call me for an appointment to see if surgery will be necessary.

My issues are this, the surgery stories I'm reading sound pretty scary but I haven't read to much on a successful pregnancy with one of these. I've read of people discovering them well into pregnancy and able to go on to deliver but nobody that knowingly had this and got pregnant ya know?! I really want to have another baby but at what risk, this has been the question bearing on my mind. Any thoughts, advice or maybe another website I haven't seen yet that may provide some answers? My other thought is if birth control puts me in this much pain what will pregnancy do??? Ack! Anyways, thanks for reading my novel and hopefully someone can make me feel so not alone!

_________________________
Angel
My blessing Christopher 9/10/2003

amykcpa · 01-14-2006, 05:16 PM

momtocj2003:

Hi -- I also have fnh but mine is a lot larger than yours -- probably about twice the size. I don't have any consistent pain -- quite honestly not much pain at all. I found out about it in August 2004 by what else -- an ultrasound of my gallbladder. Incidently -- my gallbladder is perfectly fine but I have this fnh.

I did get an opinion from a liver specialist and I had a liver biopsy by a liver transplant surgeon.

I will tell you what I was told but I definitely suggest that you seek out an opinion from a hepatologist or liver transplant surgeon before proceeding with a pregnancy. You will also want to advise your obgyn of the situation so that your fnh can be monitored carefully.

I don't have any children and don't plan to in the future so my doctors did not dwell on the fnh/pregnancy issues.

I was told that I could have a baby if I wanted to. I was further told that my fnh would be monitored carefully throughout the pregnancy -- I think every three months. I know other women on this board have had successful pregnancies and I think all of them had c-sections to prevent undue stress on the fnh during delivery.

Your fnh is tiny so you are very lucky but I do know that location can play an important role as to whether it is painful or might cause problems for you in the future or during the pregancy -- which is why it is important to get the go ahead from a liver specialist before proceding with the pregnancy.

My doctors don't seem too worried about fnh being affected by estogen. I was told that I could continue taking b/c pills but that my fnh would be monitored if I chose to do so -- again every three months.

After sporadically researching on the internet and being on this list for the past one and a half years I am not so sure that I believe fnh is not affected by estrogen -- it is a highly debated issue. So for me personally I just don't want to do anything that is going to cause a surge in estrogen -- but that is me. And I have never dealt very well with my fnh emotionally.

I was also told that fnh is not surgically removed unless it is causing pain. I have seen that surgical consideration is also given to fnh lesions that are very large.

I hope this information helps. I am sure that others will chime in to give you advice as well. There are several frequent fnh posters that have been through quite a lot and have had many more doctor appointments than me with an opportunity to ask questions.

njfashionista · 01-15-2006, 03:24 PM

Sorry for all that youve been going through..if you have seen my previous posts im a 24 y/o woman who was diagnoses with FNH in june of 05 found it post op appendectomy. The liver biopsy confirmed it was FNH my tumor measured at 10cm x 9 cm extremely large!! I met with a liver surgeon/transplant who is top notch in NYC so discuss my options which were a livere section or just watch it but b/c of its size sooner or later surgery would have to take place so because Ive been married for 6 yrs already with no children yet and plans of pregnancy next yr the surgeon thought it was best to have it removed now b/c of the complications it could give me in my future pregnancy. I never have taken birth control pills so how this thing grew in my liver to tthat size is baffling! My resection was on Nov 8 and im recovering well-few complications like 105 fever 11 days after discharge but now am doing really great! Good luck and keep us updated

momtocj2003 · 01-16-2006, 09:00 AM

Thank you both so much for the responses. It's so nice to know I'm not alone out here with this weird thing. By the way, do you guys get really mad or upset about this? I mean who said this foreign thing could invade my body???? Urgh, okay that was vent, sorry. I'm glad to hear the resection went well and I did read your story and was wondering how you were doing after those complications, no fun. My only worry is that this small fnh is very painful, it must be because of where it's located or something because by everything I read it's relatively small in size and shouldn't bother me. Well I still haven't heard from the Gastro yet (they have the liver specialists at that office) and hope to get some answers soon, until then I just wait.

Has anyone found anything to make the pain better like warm bath, ibuprofen etc.? It's not completely unbearable but it's not comfortable either.

Thanks again so much ladies, you have been a great help. I hope you don't mind if I ask more questions along the way.

FANNYLOU · 01-16-2006, 01:20 PM

Hello Everyone

I discovered by FNH Nov 04 and had a resection July 05. I had 3 pregnacies and didn't even know the tumor was there. I felt horrible pain during each of my pregnacies and each time they said it was my galbladder, but never saw a thing. The tumor was on the right posterior lobe. I believe it was there during each pregnacy over a 10 year period. They just never saw it with ultrasounds. I had dozens trying to find out what was wrong. Finally after my third child who was 3 before we found the tumor the pain wouldn't go away. I was in the hospital 9 days and it was worth not feeling the fullness and throbbing pain everyday. I ended up taking Loratab for the pain it was so bad before surgery. I have a huge scar 67 staples, I think and 21" length in total. I still take Loratab 6 months later for the pain as needed. But I also have a small 1 cm tumor that was left in there and a new tumor that has come up since surgery. So I don't know if the pain is from the small tumors or from the scar tissue and healing pains. I never found anything over the counter to help with the pain. I don't take bc pill and I need a hysterectomy.
I have adenomyosis and fibroids in my uterus and have always had csyst on my ovaries on and off. I believe all of this has got to be related and would love to know how and why. Does anyone else have female problems with the FNH?

Fannylou