Does anyone have obstetric cholestasis?

[GinIsCalling]

I have just been diagnosed with this pregnancy liver disease after suffering the most unbearable itching in my feet. I could claw off the skin at night it's so bad. I have itching elsewhere too - top of thighs for one - but my feet are horrific. I am 34 weeks and the consultant says I will be induced before I reach 38 weeks.
I scared myself reading up on it, but my consultant is an expert - so that is reassuring. I was under her care anyway for an unrelated issue I had last time (which hasn't recurred), and as soon as I told her about the itching she sent me straight to hospital for tests.
I'm told the still birth rate is now no higher than a normal pregnancy as long as the OC is carefully managed - so with medication, monitoring and early delivery it is no higher. But I'm still worried.
I started taking the urso pills the day I had the tests, as the consultant wanted me on them immediately, despite the fact the results weren't back. They are unlicensed for pregnancy but apparently essential - I read up a lot on this as wasn't convinced, but have decided to go with the doctor's recommendation.
Doctor also said not to even both with antihistamines as they wont help, I tried Piriton tablets and Benadryl cream anyway but she was right. Instead I have a bucket of water by the bed and keep adding ice and sticking my feet in. I've maybe slept for an hour at the most. Had to call in sick today, not sure whether I need to go on maternity early.
Does anyone else have/had this? Any tips?

Hi there. I'm only 13 wks pregnant and its my first so no experience of this to share with you. However, I do have a pre existing liver condition which makes me more likely than most to have OC so I'm being watched carefully in case symptoms develop. Consultant led care too so that is reassuring. I just wanted to reply so you know you are not the only one suffering! I am sure there must be others with some advice for you. I, like you, have done quite a bit of research about OC and all the info you wrote was the same as I've read inc the bit about the need to consider early delivery between 35-38 wks. Can you tell your boss so that they are aware of this complication should you need to go on leave early?

Good luck with everything! Sounds like you are in very good hands.

I had OC with both my DC. Undiagnosed with DC1 but thankfully she came early naturally.
At 20wks with DC2, the newly qualified consultant terrified me with bare facts, but with the excellent monitoring, weekly growth scans and bloods, and induction at 37wks, my DC was born happy and healthy.
Please be assured that now they know, they will watch you like a hawk!
All the best for the remainder of your pregnancy

Thanks both. Do either of you have any tips for coping with the itching?

I had this really badly in my last pregnancy; am now 11 weeks pregnant for the second time and I understand I have a very high chance of getting it again. It's an awful thing -- the combination of the itching, sleep deprivation and worry is hellish. Also it can be difficult for people who haven't suffered severe itching to empathise as itching can almost be seen as comical.

I went on urso and ended up on a very high dose as my bile acids kept going up. I don't think it helped me much, but then I don't know how bad I would have been without it. It's hard to imagine it could have been much worse -- I'd have to get up for several hours in the night because the itching was so bad, and my arms and legs were covered in scratches. Cold baths, flannels dipped in iced water, and aqueous cream with menthol all provided temporary relief, but I didn't find anything that had a lasting effect I'm afraid. If you can go on leave early, I would, as I found it became increasingly difficult to sleep.

I was induced at 37 weeks and i think my body was ready to go into labour -- OC babies often come early anyway if not induced. The birth went relatively smoothly, and DD was born perfectly healthy. The itching stopped almost immediately and I actually slept better with my newborn than I had in the couple of weeks before the birth!

I recommend you check out this website if you haven't already seen it -- lots of useful advice. www.icpsupport.org/
Good luck -- you have my sympathies!

My sister had OC with her one and only pregnancy.

She had a c-section at 37 weeks. DN was born a nice healthy 7 1/2lbs.
Couple of days in hospital for jaundice and a bit of light treatment, but other than that DN was fine, and is now a very active a lovely 9 year old!

At the time it was a real worry, but she had regular checks and scans.

She was very very itchy all of the time and I know it drove her mad!

Here are some leaflets about OC and use of ursodeoxycholic acid in pregnancy. Hope this is helpful.
www.medicinesinpregnancy.org/Medicine--pregnancy/Obstetric-cholestasis/
www.medicinesinpregnancy.org/Medicine--pregnancy/Ursodeoxycholic-acid/

Thanks all. The ice is the only thing that helps at the moment - I keep my feet in there until they are numb, then dry them and try to go back to sleep before they warm up! The itching is so bad I maybe get an hours sleep before it wakes me up and I repeat. The urso seems to have helped a little - I'm on day three and the itching has lessened slightly.

Oh and I agree about people thinking 'itching' doesn't sound too bad - it's more like a swarm of wasps stung me all over, and then left their stingers stuck in my feet. It's intense! Every night I think I can't get through it, thank goodness it eases off in the day.

I had oc and was induced 3 weeks ago at 37 weeks. The oc was diagnosed at 32 weeks and my bile acids initially improved on the urso then stayed stable for a few weeks - at 36w they shot up again so was induced after having steroid injections.
The itching is awful. I got some aqueous cream with menthol on prescription which helped a little as it was really cooling. The piriton doesn't help the itch but I did find as it's mildly sedating it could help me sleep a bit better.
Don't worry about taking urso it's been used for years to treat oc with no known adverse effects. I was terrified about stillbirth etc too but was told the same as you - no higher if on medication and delivered early.
Hope you're ok and asleep

I was diagnosed with OC at 40+4 - I'd been itchy (although not unbearably so) for a couple of weeks. I was induced the same night. Thankfully DD was fine.
I'm still waiting for my day 10 blood results to see if things are returning to normal. Given the likelihood of it occurring again, it is causing me to have serious doubts about having another baby.
Hope you are ok Gin I second looking at the ICP support website - and there is a FB page too. There is a research project just starting if you are close enough to
london and would like to participate.

Have you not been prescribed antihistamine for the itching? I had this with DC1 x

I was diagnosed with OC at 31 weeks at the end of Nov. The initial worry was terrible, but the monitoring is really reassuring. The urso fortunately worked really well for me and my blood levels (which had been very high for bile acids and ALH) were back within normal range before I was induced at 38 weeks.
I found my itching went away with taking the urso, but I know I was lucky and not everyone responds to the medication. It does sound like u r though, so fingers crossed for you that the itching subsides soon!
Good luck, I know OC is scary when u r first told, but is so carefully managed now that the risks really are minimal.

I had it in my last pregnancy. Found that hot bath with e45 emollient in helped the itching a bit. Got it from boots I think xx

Don't want to go off topic but in my last pregnancy I developed severe itching all over my abdomen, bright red rashes and horrendous itching, kept me awake and made my life a misery, also I had it on the palm of my hands and backs of my hands, big wheels and the itching was out of this world. This was 13 years ago and they didn't tell me what it was, I since found out it was called PUPPS. Not many people have heard of it but it's very similar. Suffered in third trimester.

Sorry correction, urticarial papules and plaques of pregnancy (PUPPP), just googled it

The urso has really helped with the itching, so I'm getting some sleep now. Someone mentioned antihistamines but they don't help with obstetric cholestasis as the itching is caused by the bile acids affecting the nerves. Some of those drugs make you sleepy, which supposedly helps, but I'm keen to avoid any extra drugs as already feel like I'm on too many!
Unfortunately although the itching has eased I'm having lots of braxton hicks, which is stressful. They aren't painful but as I know the disease can cause preterm labour it stresses me out! I'm 35 weeks tomorrow, keep googling to see what my babies chances would be if born now, and it isn't a disaster, hopefully.

Urgh the itching is back! This is horrible.