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Lichen Sclerosis and Childbirth Help!! C section?

(34 Posts)
bubbles86 Wed 10-Apr-13 12:11:38

Im absolutely terrified of a natural childbirth and what the consequences will be. Can i opt for a C-section?

I was diagnosed with Lichen Sclerosis about 5 years ago. It's an auto immune illness with no cure. It causes tears down below due to itchiness or movement which then scars and fuses the skin. I was given steroid cream which thins the skin and speeds healing. I noticed a pattern that when I'm due on my period and my hormones are high, the symptoms get worse.
Now im pregnant (22 weeks gone) my hormones are crazy the symptoms have got worse and now im pregnant I cannot use steroid creams.
Im tearing for the slightest thing at the moment and im so sore and uncomfortable sad

My first midwife appointment was back in January and she said she would refer me to a conulstant as she as no idea what Lichen Sclerosis is and cannot offer advice - I have not heard a thing since. whenever i call a midwife they cannot help me.

Im getting very anxious as i would just like some professional or mid wife to know what ive got and agree to a c-section.

I believe i would heal alot quicker from a c-section than a natural birth as a small tear for normal people may be a 4th degree tear for me.

Has any one got this illness and what birth did they have please??

ghislaine Mon 13-May-13 20:54:06

You are being incredibly patient.

I am currently 15 weeks pregnant and saw my gynaecologist at the weekend. I asked her about delivery and she said she would write immediately to my hospital consultant recommending a c-section in very strong terms and cc me in case the letter doesn't get to him. (The midwife I saw at my booking-in appointment was very sympathetic when I explained to her about my LS and made a consultant appointment for me at 19 weeks.) I don't expect to have any problems having a caesarean approved again.

I mention this not to gloat but because I think this should be the norm for people in our situation. Is the gynaecologist you're seeing part of a vulval clinic? You really need to see a specialist in the disease.

Anyway, if you can spare a few hundred pounds and time to come to London, please PM me for some specialist recommendations. It would be expensive but it might be worth it to put your mind at rest.

mayhew Mon 13-May-13 21:35:06

32 weeks is plenty of time to sort things out. Its the uncertainty that's rattling you
As long as they make a plan by 36 weeks, all should be well.

ghislaine Fri 21-Jun-13 22:35:46

How did you get on, bubbles? I hope you saw someone sympathetic and are on your way to getting the c-section you should have.

CylonNumber6 Fri 19-Jul-13 16:05:44

Hi Bubbles,

Ive just been reading this thread and wondered how you were getting on?

I have LS and am 8 wks preg. My midwife has seen one case of it before which had a VB. I've been referred to a Consultant at around 20 wks.

Not sure I want a CS but I certainly don't want a manky fanny at the end of it all.sad

lulubells Tue 30-Jul-13 07:56:44

I have LS and have recently had a VB. I was petrified throughout my pregnancy that whilst I would be able to have a VB the aftermath would be horrific! What amazes me is that it seems every person with LS who is concerned about the birth is fobbed off. I don’t think there’s much understanding of LS as it is quite rare in younger woman.
I see a consultant every 6 months for my LS anyway so managed to get myself consultant led care instead of just midwife led. At every appointment I had I was told it was all going to be fine and to stop worrying, no one seemed to understand LS at all. When I tried to make a birth plan I was told to wait until later. It ended up been at 35 weeks and the person I saw told me it would be ok and I wouldn’t tear?!! Seen as I can tear at the slightest thing I thought this to be highly unlikely. I demanded to see a different consultant and finally made a proper birth plan. The 2nd consultant recommended an episiotomy to control the tearing.
Throughout my pregnancy I had a few minor flare-ups but on the advice of my consultant I used dermovate to keep them in check. I also did perineum massage in the third trimester to get my perineum in as health supple state as possible. Don’t know if this helped at all but I felt I had to do something!
Anyway I ended up with an amazing midwife for my birth that gave me an episiotomy and kept a good watch on my perineum. And whilst I did have a tear on my upper labia it wasn’t a bad one and healed ok. My baby is now 7 months and I had my first flare up when my periods returned.

bubbles86 Tue 26-Nov-13 14:28:59

Hi sorry for late update

I went to see a consultant from another hospital and he said I would be fine and he explained why. Not a great explanation but it was better yhan hearing "lve not heard of it"
To be honest I just gave up n accepted that no one was gunna help me
When it came to the birth I had a vb. Ten mins before a gave birth a consultant had to be called in as I was struggling to push. Ive never seen this consultant before called dr thomas. He took one look at my notes and pointed out to the midwives that I have LS which means he had to quickly perform an episiotomy.
I felt relieved that he noticed and obviously took steps to help me instantly
Ive felt delicate afterwards. I had to use extra thick maternity pads for a very long time as slim ones caused me pain.
The episiotomy healed very well n quickly and ive had no problems since. I really do believe that hormone levels cause LS to flare

I think all of midwives n doctors need better educating in LS.

If I had been given a proper explanation with lots of info when I wss pregnant I wouldnt have had all that stress.

My LS flares when my hormones are high usually around my periods. As I am breastfeeding my hormones are pretty much level. So all is well

bubbles86 Tue 26-Nov-13 14:30:30

Hi sorry for late update

I went to see a consultant from another hospital and he said I would be fine and he explained why. Not a great explanation but it was better yhan hearing "lve not heard of it"
To be honest I just gave up n accepted that no one was gunna help me
When it came to the birth I had a vb. Ten mins before a gave birth a consultant had to be called in as I was struggling to push. Ive never seen this consultant before called dr thomas. He took one look at my notes and pointed out to the midwives that I have LS which means he had to quickly perform an episiotomy.
I felt relieved that he noticed and obviously took steps to help me instantly
Ive felt delicate afterwards. I had to use extra thick maternity pads for a very long time as slim ones caused me pain.
The episiotomy healed very well n quickly and ive had no problems since. I really do believe that hormone levels cause LS to flare

I think all of midwives n doctors need better educating in LS.

If I had been given a proper explanation with lots of info when I wss pregnant I wouldnt have had all that stress.

My LS flares when my hormones are high usually around my periods. As I am breastfeeding my hormones are pretty much level. So all is well

jeansthatfit Tue 26-Nov-13 19:08:01

bubbles, I'm glad you had a good outcome despite the system. You had a lot of potentially avoidable worry along the way.

Btw - as someone who has had planned caesarians for 2 births, both of which involved pre-term birth - the advice up thread about 'as long as you get something agree by 36 weeks' is just nonsense.

IME, decisions about planned cs's are left very late in the day for no good reason at all (other than to force people into panicky unplanned vaginal births).

If you have a medical condition that is rare/hard to explain/traumatic to explain, then going into labour before 39 weeks (which isn't rare) with no agreed birth plan is HELL. You see different midwives over and over again, have to try and have the same conversation over and over again, no one understanding or having time to find out about your condition - it's a nightmare.

You can get things agreed early on, but you have to fight your corner. You have your baby now Bubbles, and congratulations! I'm just posting in case anyone googling finds this thread.

Bue Wed 27-Nov-13 10:23:54

Bubbles, glad you had a good outcome but I'm sorry you were not listened to. I totally agree that midwives and doctors need much more education about vulval conditions. I may even make a suggestion to my uni that a session on this should be included in the course as it is so important and relevant to maternity care.

Totally agree as well about planing for ELCS being left way, way too late. I see so many women in antenatal clinic who can't enjoy their pregnancies because they are so anxious about the plan for the birth, and know they may have to argue with the hospitals doctors to get the CS they feel they need. It shouldn't be like this. VB is not appropriate for everyone!

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