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Obstetric cholestasis

victoriaevans999 profile image
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Just been diagnosed with obstetric cholestasis I have read some horror stories online and am now worried sick. Has any one been through it or do you have it just need some reassurance!

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victoriaevans999
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16 Replies

I haven't had obstetric cholestasis but I know people who had and I know it is extremely uncomfortable and frustrating but manageable with the help of your GP or hospital obstetrician. One important lesson I learnt is to never read personal stories and draw conclusions for potential health outcomes. For example you don't know if these women had other health issues that compounded on their cholestasis. Only read info from accredited sources e.g.

nhs.uk/conditions/pregnancy...

Hughesie1206 profile image
Hughesie1206

I have had OC in 2 pregnancies, and waiting for it to start again, if you want information on ICP (it is the scientific name for OC)ggo on to icpsupport.co.uk or they also have a group on facebook called icpsupport, all research that you read comes from them, including the nhs's info, the group is founded by a coworker of professor williamson who is one of the world leaders in the condition, use them, do your research, ask for advice if/when u need it, sadly there is no set standard of care for an icp pregnancy and some consultants and hospitals play down the (possible) severity of the condition, but a properly managed ICP pregnancy, regular bloods, bile acids, monitoring, medication + induction between 37-38 weeks is believed to be no more risky than a normal icp free pregnancy. I hope that information helps you hun and all makes sense, speak to the ladies on the group, they explain it better and every single one has been where you are. Xx

Barry87 profile image
Barry87 in reply to Hughesie1206

Hi Hughesie, is 37-38 week induction the case for 100+ bile readings too?

My partner was diagnosed with Chloestatis in week 29. Her reading was 119. She's been taking Urso 500mg 3 times a day for the last 4 weeks and thankfully her Bile reading is now much lower. It's reduced from 119, 80, 15 and 8.9. Doctors still want to induce her at week 36 + 4 days. I'm just wondering now that her bile readings have significantly reduced, should we go ahead with week 36 + 4 days or try to get to full term (37 days). We have seen 3 different doctors and they all suggest different induction dates (week 35, week 36, week 37). Partner is currently 33 weeks + 4 days.

victoriaevans999 profile image
victoriaevans999

Thanks Ladies, the info/advice you have given is great. :-)

Mumof2-2014 profile image
Mumof2-2014

I have had it twice, with both my children, am pregnant again and surprise surprise! It is really frustrating because of itching during the night, not much that i tried helped to relieve this, but i was perscribed Ucda tablets, and had weekly monitorings and bloods, induced at 38 weeks with both and both are happy and healthy :) 4yrs and 1yr. Not a lot to worry about as long as your vigilant when it comes to making sure you get anything your worried about looked at, such as reduced movements of baby or itching getting worse! You must seem advice! Other than that I'm afraid the itching is awful! But dontbworry about baby x

Babyshark3 profile image
Babyshark3 in reply to Mumof2-2014

How many week were u when u started feeling itchy again for your third baby?. I had it twice with my boys now 4 and 1 and I'm 34 weeks with my baby girl. I think I might have it again but idk

Barry87 profile image
Barry87 in reply to Babyshark3

Hi Babyshark, was your 2nd child delivered safely?

My partner was diagnosed with Chloestatis in week 29. Her reading was 119. She's been taking Urso 500mg 3 times a day for the last 4 weeks and thankfully her Bile reading is now much lower. It's reduced from 119, 80, 15 and 8.9. Doctors still want to induce her at week 36 + 4 days. I'm just wondering now that her bile readings have significantly reduced, should we go ahead with week 36 + 4 days or try to get to full term (37 days). We have seen 3 different doctors and they all suggest different induction dates (week 35, week 36, week 37). Partner is currently 33 weeks + 4 days.

Barry87 profile image
Barry87 in reply to Mumof2-2014

Does this apply to women with bile readings of 100+? Was your bile reading ever that high?

My partner was diagnosed with Chloestatis in week 29. Her reading was 119. She's been taking Urso 500mg 3 times a day for the last 4 weeks and thankfully her Bile reading is now much lower. It's reduced from 119, 80, 15 and 8.9. Doctors still want to induce her at week 36 + 4 days. I'm just wondering now that her bile readings have significantly reduced, should we go ahead with week 36 + 4 days or try to get to full term (37 days). We have seen 3 different doctors and they all suggest different induction dates (week 35, week 36, week 37). Partner is currently 33 weeks + 4 days.

Babyalli1 profile image
Babyalli1

Hi, I’m on my fourth child with OC, it’s really annoying and was induced at 37weeks for previous pregnancies. As for this pregnancy my midwife said “study shows that women can now go longer than 37 week with OC”, in my opinion she’s having a laugh because the itching is worst than I can remember with my last pregnancy which was 8yrs ago today, my first is going 12yrs and second 11yrs, they are all fit and fine. My 8yrs would have been an issue, but nothing happened I was quickly taking in for emergency CS. Trust me you will be fine, don’t listen to the terrible stories, every individual is different. All the best

Barry87 profile image
Barry87 in reply to Babyalli1

Does it matter how high the bile readings are or have been?

My partner was diagnosed with Chloestatis in week 29. Her reading was 119. She's been taking Urso 500mg 3 times a day for the last 4 weeks and thankfully her Bile reading is now much lower. It's reduced from 119, 80, 15 and 8.9. Doctors still want to induce her at week 36 + 4 days. I'm just wondering now that her bile readings have significantly reduced, should we go ahead with week 36 + 4 days or try to get to full term (37 days). We have seen 3 different doctors and they all suggest different induction dates (week 35, week 36, week 37). Partner is currently 33 weeks + 4 days.

Hello all.

I am not pregnant - being male - but have been living with itching for many years now and hearing about ICT wondered if there might be a connection. Before you all fall about laughing and turn off let me explain.

I have strong itching between my shoulder blades, down the sides of my body and legs and symmetrically placed (i.e. itching in the same position on both sides). I think it may have begun strongly some years ago when I started statins which act on the liver - so a liver connection with ICT.

The itching goes away and then returns which makes me wonder if it is triggered by something dietary perhaps or a change in liver function.

I seem to recall always wanting my back scratching as a kid as did my younger sister who has had four pregnacies and as far as I know has experienced ICT in most of them and certainly the last 2. So could a version of ICT occur in males that is triggered by a liver condition as in the case of pregnancy in women and both me and my sister have a genetic suseptibility in the liver department that makes "ICT" more likely?

I post this scenario here in case anyone who has a wider understanding of ICT can perhaps shed some light on my situation. I have briefly mentioned it to my GP but got no futher. I also saw a dermatologist consultant years ago by all you get is a suggestion of creams to use.

Anyone with possible suggestions or ideas?

Thanks.

Mash2020 profile image
Mash2020 in reply to

Hi. I had the itching in both my pregnancies. My kids are now 28 and 26. I still itch. I take 5 antihistamines a day. I was diagnosed with chronic urticaria ideopathic angeodema. My feet and legs are the worst and I've had to have tattoos on feet and legs to hide the scars from years of scratching. I used coarse sandpaper at one point as it was was that bad. Cooling my feet so they're really cold helps a little but not good when you've got Raynaud's phenomenon too and fibromyalgia.

Raverbabyb profile image
Raverbabyb in reply to Mash2020

I also had/have this !! My son who's now 8yrs old was born at 32weeks. I suffered really bad with this on hands and feet and thought I was going mad at 1st (literally) put off telling docs as thought theyd tell me i was imaganing things so when I got told I had this i was so relieved only to go into labour the nxt day !! Like you and so frustrating 8yrs on not so much my hands but my feet itch like mad moreso at night 😢 1 foot will start and soon as I think I've clawed at it enough it stops, the other side then flares up in exact same spot only to carry on throughout the night :-(. Glad to see it's not just me that this happens to. Pray this gets better as I do for you and everyone else this affects as know it plays a part in my mental health also :-( x

mash2021 profile image
mash2021 in reply to Raverbabyb

Unfortunately I still itch. I'm now on 8 antihistamines a day. I have fresh sores on my legs. Praying for a cure as I have fibromyalgia and other ailments too

Crk281 profile image
Crk281 in reply to

The mechanism of itching with liver problems is to do with raised bilirubin or bile acid levels. Statins will usually cause a rise in the transaminase enzymes but not in all people, and this wouldn't result in itching. Your gp should usually do bloods including liver function and kidney function in a case of itching with no clear rash or cause. If they are normal you can be reassured. However we often don't find a reason for itching in a lot of people, it may just be generally dry skin.

medsciau profile image
medsciau in reply to

Hi Hidden,

Not crazy at all.

I work in medical research, including into ICP.

I have noticed that sometimes a woman has ICP with some pregnancies, and not with others. and sometimes the difference appears to be different paternity! That means that the male can have something to do with women getting ICP.

So, given your sister has had ICP and you have itch with a medication, I agree that is is likely that you and your sister share a gene that increases your risk of itch in response to medication, plus or minus food, plus or minus hormones (in the case of ICP), just as you have suggested.

As Crk281 suggested, I'd suggest you ask your GP to order liver function tests for the next time you get a serious itch.

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