I may have posted this before, but have you found that you get more of the liver pain we all get when you menstruate? I have the back and side pain worse right before, during and right after my period.
I figured since the liver makes all your clotting factor, that it works overtime during menstruation.
Has anyone noticed this? I have heavy periods due to a fibroid and I think I just crash during these times.
Hi Notor, I hope you get some good advice from those who know more re: the liver pain.
However, I wondered if you had considered a mirena coil for the periods and the fibroid? I guess it obviously depends on the size of fibroid and lots of other factors specific to you, but I had a mirena over 4 years ago and it improved my life so much. My periods had always been painful (I had mild endo, and was on the pill much of my fertile life) but they got pretty awful once I was told to stop the pill at 50. Periods also became more frequent, and I was getting all sorts of aches and pains, especially in my joints, but all were obviously cyclical. All this stopped once I had the mirena fitted, and it's been wonderful for 4 years, but now I think some of that pain is creeping back. I do wonder if it's because the mirena is nearing the end of its span.
I keep meaning to ask on here - and some of the other sites - if anyone knows of the significance of progesterone for PBC.
I hope this may be useful, and that you get some more specific advice.
Hi! I was told to stay away from hormonal birth control because my second pregnancy seems to have triggered my liver problems and symptoms get worse when I take the pill. I was also adviced not to get pregnant again...something about a risk of estrogen or progesterone being toxic for some womens livers....supposed to be a very rare reaction, though...
Hi it would be really good if you could remember if it was oestrogen or progesterone, or who told you, where they got it from, or any more detail.
Obviously most of what I'm saying is related to myself - and other women like me - eg. as now a menopausal woman. Also for me, pregnancy was never an issue (never wanted children). I just know that bad periods and the - for me, relatively mild (read the many, many horror stories on the endometriosis site) - other problems of endometriosis made much of my fertile and perimenopausal life a misery, and the mirena alleviated all that.
I think I'll post a question on here and a few relevant other sites about progesterone, as I'm sure I saw something positive about it and autoimmune conditions relatively recently.
NB It might also be to do with how the progesterone - as with all hormones - is delivered. In the Mirena it's in situ, and can target the uterus & ovaries direct, in tablets it has to be processed by the liver. Same for oestrogen I think, although that at least does work when on patches, and is safer that way: progesterone can't be absorbed through the skin (which is why prog-creams aren't supposed to be much use), so the Mirena was developed.
Well its a long story but to summarize it...ive seen many specialists in my home country (honduras) and they all believe I have PBC and started me un urso. I went to see a hepatologist in the US, specialiZing in PBC (top dr I could find), he thinks its related to "pregnancy hormones". Since i am AMA negative, he thinks that my liver problems can clear up. He did indicate that I continue my treatment for PBC. However, my baby is 14 months old and I still have elevated LFTs. Lots of online research indicates that it is estrogen that can produce toxicity in the liver. These studies do not mention progesterone, but since my drs said "pregnancy hormones" im not sure. I do get severe itching when I take the pill now that i have liver problems ( i didnt get that in the past). All my Dr.s tell me to stay away from any kind of hormonal contraceptive, even after I specifically asked about Mirena.
Hi Mcsv, thanks for telling me all that, it's made me feel a bit more confident again about progesterone, but I will try to check it out much more carefully. So sorry to hear of your problems. You are the opposite to me, as I test +ve for AMAs, but my lfts still perfect after 22 years, and I have no symptoms. However I guess I wonder every day if PBC will appear.
I do hope the lfts normalise as soon as possible. I thought there were lots of simpler reasons for elevated lfts besides PBC, and I'm sure on here there have been others where it has only been an issue during maternity phases and after. I do hope it all calms down, and you can get back to enjoying your baby and motherhood 100%, without PBC-type worries.
Take care.
I have read everywhere that most ppl with +ama never go on to develop PBC. You need to also have raised Lfts or a positive biopsy. Just keep checking your levels and I hope you never have to worry about PBC. Best of luck,
Marcia
Did you get upper abdomen ultrasound ? I had same issues and ultrasound found Liver Hemangiomas.
Hello NotorDJP.
I don't experience what is known as pain in the liver area (diagnosed PBC Dec 2010 after starting to itch early 2010).
Apparently in early liver conditons the blood clotting is said to be just fine. I have had a few clotting checks in recent years and all within a good normal range. I had these due to suffering nose bleeding from one side of my nose )caused due to a tiny pinprick graze that persisted in occurring despite a few cauterisations.
I would imagine during menstruation a woman is more than likely to succumb to anaemia as opposed to blood clotting problems.
I cannot answer your question as to pain in the liver area and the variations of this at certain times in the female cycle.
Since early 2013 when I started going through the menopause and my cycle went a bit haywire and irregular I've not actually experienced any of the lower back pain I normally used to get just before the cycle began. I haven't really had any radical changes in over a year now, just waiting for it all to stop as would be easier as these days I have no idea at all when my cycle is about to start.
I somehow do not think a coil may be advisable for someone with PBC as GrittyReads has mentioned below. Your Family Planning doctor would be able to advise there as I know there are two types here in the UK (my daughter had both for awhile) and one can cause heavy bleeding, the other can cause a cessation but I don't know which.
NB Just to clarify, in case others are interested in the Mirena coil ...
Until very recently there was only one type of Mirena, which delivered a localised dose of progesterone to inhibit and (hopefully) stop ovulation and subsequent periods - very useful for women who suffer from endometriosis, as well as those wishing to avoid pregnancy. There is only now, from Bayer, a second type of Mirena called the Skyla, which delivers a lower dose of progesterone-substitute; but it only lasts for 3 years instead of the 5 that the main one lasts. The Skyla is not as successful in stopping ovulation - because of the lower dose - but is helpful for women who don't tolerate the progesterone-substitute. So the normal one generally causes a cessation in pain and bleeding, while the Skyla won't be as successful, but it is not the case that either Mirena necessarily cause the bleeding. As the pain of insertion is the main issue with the Mirena, the 5-year one is better for women who will need it replacing to avoid endo symptoms.
There are, and have been over the decades, quite a few different types of IUD for contraception, often using different means/chemicals for achieving their aims, but until recently only the one Mirena. My understanding has always been that the different responses of women to the different IUDs is usually more to do with the women and their conditions (eg, most notably endometriosis) than the devices, although I think some of the older IUDs had a bad reputation. My experience with the Mirena also suggests that some women are fine and think it's Divine, while others can have pain - although it can depend on how long it is allowed to settle down before they give up.
When I inquired about having a Mirena, I was in agony from increasingly heavy and frequent periods, and my GP - and particularly my gynaecologist (who as far as I am concerned 'walks on water') - both checked and said it was fine for PBC (but then it's generally taken that I don't have PBC, but just test +ve for AMAs). My Mirena is due to run out, soon, and I want another .... (!!) ... as I'm convinced my current aches and pains are due to dropping progesterone and not to do with PBC, as they are exactly like what I was experiencing 6+ years ago, before the Mirena. I say this as I am curious to know more about whether progesterone plays a part in alleviating joint pain, and whether it would help many of us who suffer from auto-immune conditions that have joint pain as a main symptom. I know oestrogen is always touted as the one to help joints, but my pain definitely decreased with more progesterone as I was oestrogen dominant.
Sorry to highjack your question Notor.
Thanks for all your replies! My pain is right around my liver and is cyclical for sure. Its as if everything in there swells and makes it worse. I usually take an iron supplement during that time and it makes my fatigue better, but the pain usually is the same. I have pain all over though during that time. Lower back, joint everywhere. I almost feel like I have the flu for a few days. The thing is, this doesn't happen every month, only some. I know I am probably perimenopausal, but my periods are still pretty regular, so I don't think I'm full on in menopause. I never had kids either, Gritty, and never really had the desire. When I finally thought I might like to have one, it was too late for me due to some of my husbands health issues and mine both. The way the world is today, I am more at peace with my decision. Not to mention, I have a feeling that pregnancy might have pushed me further along in PBC, knowing how I am with things.
Hi Notor,
I am post menopause, so I can't say about the correlation of the liver pain to menstruation. However, there were a couple posts on hear regarding Endometriosis that gave me pause to think about this.
I suffered horribly from Endo from the time I was 12 to 24. I had 8 surgeries to remove the Endo and finally ended up having a partial hysterectomy when I was 24. The removed my uterus and cervix. This alleviated my symptoms and for years I felt pretty good. Then I started getting pain again and bleeding when I was 35 (ten years ago). then I had to have my ovaries and tubes removed. Actually I only had 10% remaining of my left ovary. The rest of it along with my right ovary was completely destroyed from the disease.
Unbeknownst to me at the time is when I was having all the PBC issues. My gall bladder was removed the year before. My LFT's were going up. I was getting the pain and under my right rib cage. Also in my liver area I have a small swollen spot that has never gone away. I started thyroid medication. All these years, I blamed the Endo and the Menopause for the issues I had, but really it was the PBC going undiagnosed.
After hearing some of the posts on this thread, it makes me wonder if there is more of a connection between PBC (or other liver issues) and hormones than we give it credit for. Incidentally, my sister who also had Endo has Hemochromatosis and also had benign tumours removed from her liver.
I do continue to have this pain in my liver area that goes all the way around to my back in the same location. It feels as though my ribs are expanding. Sometimes it has a hot, burning sensation. I have noticed that when I lift heavy objects and do a lot of bending, it gets worse. So I have been trying to take it easy.
Regarding your fibroid...are they going to remove it? That may help with some of the pressure and heavy bleeding. Also, has your doctor put you on Vitamin K? I have been taking this due to bruising and it has helped. Instead of doing the shots, I take it orally. I only take 5ml a week. It doesn't sound like much, but it has definitely helped the bruising.
~TJ
I can relate to this. A couple of years ago I asked my consultant if there was any connection as i was experiencing discomfort in my liver whenever i had my period he said no. I disagreed as my periods are not as regular due to my age so i knew when my liver is causing me discomfort it is always at my period. I am sure it is connected. I have an excellent consultant but there is much they dont know. You are the first person i have seen mention this and i completely agree there must be a reason. I am seeing my consultant in August so i will discuss this again with him. The one bit of advice i would give you if you have heavy periods ask your doctor for a Marina coil which will stop your periods and hopefully stop your pain.
Good Luck
TG
I thought i was crazy...i tooo get liver pain during the 10 days before my period.. i really dont know if it is related but for twi years now this has been happening.
Just reading this again, as this month the pain is very bad with my period. It is totally related. I can almost tell when I will start now from the liver pain. I don't know why it is, but it definitely is. I really don't want to go on anything like the coil. I am just skittish about anything that will mess with my body in anyway. It could be hormonal, because my face breaks out now too, which it hardly every did before, the week before my period. Update on the fibroid , it has been getting smaller and they say it is showing signs of dying. My back and side hurt so bad tonight that I had to take pain pills
Mine hurts bad today too. Im too scared to find out it if is sinister. Been this way for two years every period time.
Interesting, I thought my side hurt worse during that time of the month as well. I've not been diagnosed with PBC as of yet. My alkaline phosphate has been mildly elevated a few times and I had one +AMA M2 antibody of 68, high C-reactive protein, and + tumor marker that when I looked it up can be caused by PBC. The liver Dr. ran more blood work and wants a liver biopsy next month. He also said my liver is enlarged and soft. I was sure I had gall bladder problems since my sister and mother have had theirs removed, but all the hida scans and other tests were normal. Since, March I've been diagnosed with Endometriosis/Andenomyosis, Hashimotos, and hyperparathyroid which I had removed in Sep. Hyperparathyroid can also cause elevated AP along with high blood calcium so I had assumed the earlier fluctuations was because of that, until the bloodwork after surgery and it was high again. Surgery generally cures hyperparathyroid. The GP I'm seeing now I just started seeing back in March when the diagnoses all started and I decided to revisit the liver pain I've had all these years but been unable to figure out why it hurt because the tests were always normal and the Drs. I was seeing then we're just trying different meds that weren't helping so I just kinda gave up on finding the cause. Even after, they diagnosed the Endo I thought that must have something to do with the liver pain and that it had traveled there perhaps and flared up during menses. Now, the pain is more constant and I don't know what to think. My GP felt it was probably a false positive when he referred me to the liver specialist. The liver Dr. Mentioned ruling out fatty liver and celiacs to be sure, but the IgA came back normal. I did have an ultrasound too...also normal. Sorry, if I'm rambling I just thought that I was just going crazy and it's nice to know that someone else has made that same connection.
It just makes sense to me that the pain might be involved with this. I was in bad pain this month and it just went away when the period stopped. It is common sense that if you bleed the liver is involved in your clotting function. If its working hard to stop you from bleeding to death during your menses, then it would get inflamed. It doesn't even hurt today, but my period stopped the first of the week. Some months its worse than others. I have to eat very very well during my period or its even worse. I have been trying to lose 25 lbs now for about 4 years and it has gotten very difficult due to the fact that my food doesn't digest as well now and I get hungry more. I am going to start measuring the sugar I eat during the day and pay more attention to it. But its hard to eat healthy when you don't have the energy to cook sometimes.
I am trying to make hearty soups with good things in them that last all week. It will be easier to eat that.
NotorDJP, Do you have those moments when it feels like your blood sugar has dropped and you get the shakes? I do more often than I ever did, especially after breakfast and I have either ate oats or cereal and it never stays with me long (especially when I don't have any protein) and I'm looking for something else to eat within a couple of hours or I'm getting the shakes.
I got the shakes last Saturday and didn't know what it was, but I did feel better after eating. I eat more sugar than I ever did because sometimes I almost have to have it. I don't know if thats a sign my blood sugar is low or not.
Hi, I also have started having the shakes, don't think mine is lack of food as it happens at different times of the day ie; have it just now, it seems that regular now that I don't notice as much as my husband does unless I'm holding something. Know this doesn't help you but at least you know you are not alone.
ps. I was tested for diabites
Hi, I also have started having the shakes, don't think mine is lack of food as it happens at different times of the day ie; have it just now, it seems that regular now that I don't notice as much as my husband does unless I'm holding something. Know this doesn't help you but at least you know you are not alone.
ps. I was tested for diabites
Hi, I also have started having the shakes, don't think mine is lack of food as it happens at different times of the day ie; have it just now, it seems that regular now that I don't notice as much as my husband does unless I'm holding something. Know this doesn't help you but at least you know you are not alone.
ps. I was tested for diabites
Hi, I also have started having the shakes, don't think mine is lack of food as it happens at different times of the day ie; have it just now, it seems that regular now that I don't notice as much as my husband does unless I'm holding something. Know this doesn't help you but at least you know you are not alone.
ps. I was tested for diabites
Hi, I also have started having the shakes, don't think mine is lack of food as it happens at different times of the day ie; have it just now, it seems that regular now that I don't notice as much as my husband does unless I'm holding something. Know this doesn't help you but at least you know you are not alone.
ps. I was tested for diabites
VERY SORRY,
Don't understand why this reply has been repeated so many times, I do seem to be having problems with my PC at the moment so I can only put it down to that. Again I'm truly sorry for the wasted space.
I didn't even get finishing my wee note, at the end my diabetes tests were clear. So can't put the shakes down to that.
Hi all,
My periods were so painful I have adenmyosis (can't spell it) was scheduled for a hysto two years ago but my Dad was dx with lung cancer and put on the back burner. He passed away last year and no hysto.
I had the mirena placed in to see if it helped. Was dx with Pbc Jan and had this placed in March. First few months were hell with it, almost had it removed.
I noticed my liver pain was worse with periods. It def triggers it.
The mirena has more or less stopped the bleeding. I still get some of the pain but nothing like it was.
They keep me monitored. Until they tell me it has to come out I don't regret getting it and if your having same problems ask about it. Helps us poor woman so much.
Merry Christmas.
Anne. X
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