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??

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!

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.

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

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

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.

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

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.

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 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.

bubbles86 Mon 13-May-13 12:19:04

Just an update...

After having an appointment with my Dr, he said he would send a letter of referral to another hospital with a specialist...
I have called and called both hospital and dr's so many times and the letter had been 'lost'. another letter got sent and this after lots of chasing was 'lost' too!! grrrr
eventually I made the receptionist at dr's fax the bloomin letter to the hospital who have called me next day (today) with an appointment for 17th of June with a gynaecologist. I am 27 weeks pregnant today. Il be 32 weeks by the time the appointment arrives.
feel like times running out to secure a c section an breath a sigh of relief...
anyways i'm calling the hospital every day to check for a cancellation so fingers crossed.
Its not been nice and easy so far its like a battle

I had a VB with LS, my dermatologist said it would be ok. It wasn't and I have had significant complications as a result which have never fully resolved. Please do push for decent care and watch out for the waiting time on vulval clinics as they can be months, but you obviously don't have months.

ghislaine Tue 16-Apr-13 16:59:24

That's great news! Let us know how you get on.

bubbles86 Mon 15-Apr-13 20:44:57

GOOD NEWS! Just been to my family GP told him im worried about natural birth with my LS and that the consultant dismissed my case without seeing me.
He was not happy, i gave him the list of vulval specialists if he needed it to refer me.
He looked back through my files and found notes that a female dr has refered me to a vulval clinic!? Ive never been referred before or even seen a vulval specialist.

Anyway he asked who and where id like to go to and to leave it with him he will sort it straight away.

I love my dr! Hes been my gp since i was 2yrs old. I was in there for about 5 mins and he sorted it out.

Fantastic i feel so much better now smile
Il keep this post updated in case it can help others

bubbles86 Mon 15-Apr-13 09:34:42

Thanks guys again. I feel better knowing I should get a c section. Just frustrating when I was told no by an OB. Im at my family GP tonight, I have printed our a copy of the Vulva Specialists, highlighted the nearest and best to show my GP where I want referring to.
Once I have a letter from a specialist recommending a c section Im giong to demand a new OB and make a complaint about the last one.

feeling more positive now.
Fingers crossed it goes to plan....

ohmentalnessisme Sat 13-Apr-13 16:01:38

That is really shocking and I agree with Norem that you should make a complaint. I have a friend who recently complained about some issues she was having with her antenatal care and the complaint team got things sorted for her pretty quickly. angry on your behalf!

Norem Sat 13-Apr-13 15:16:32

Hi op if I were you I would put a formal complaint in about your consultant.
He or she has made a clinical decision without seeing you. Why should you have to spend all of your pregnancy worried and anxious about the birth.

Bue Sat 13-Apr-13 14:25:41

Oh dear, this isn't good bubbles! You should absolutely be grated an ELCS for LS, but as a student midwife I also know that a lot of OBs do not have great knowledge of vulval conditions, probably because they tend to be the domain of dermatologists. I completely agree that you need an urgent referral to a vulval specialist and a recommendation from him or her. I have vestibulodynia and it makes me sooooooo angry how these conditions are diminished by medical professionals. You could also try contacting the Vulval Pain Society for help - the consultant who works with them is David Nunns in Notthingham and he is apparently excellent.

georgettemagritte Sat 13-Apr-13 05:10:18

NB if you're anywhere near East Anglia and can go private for a consultation try Pamela Todd - I saw her for an unrelated skin problem and she was great (and I know she's the consultant for my friend with LS)

georgettemagritte Sat 13-Apr-13 05:05:44

Agree that you need to get a referral urgently to a vulval specialist - I don't have LS but a friend does and she sees a consultant regularly for checks on it and was likewise told not to have a VB if she got pg. Once you've seen a specialist you should be able to get them to recommend a section. Definitely fight this one! Could you go privately to get an urgent referral for the LS just to get a letter you could show the midwives/GP? Good luck xxx

ghislaine Fri 12-Apr-13 21:14:52

Just had some more thoughts about this.

Under the NICE guidelines you are entitled to ask for a referral to another consultant if the first has refused your request for a c-section. Can you arrange this through PALS or the Supervisor of Midwives and in the meantime, get an appointment to see a vulval disease specialist who can write a supportive letter AFTER ACTUALLY LOOKING AT YOUR SKIN (excuse me for shouting, I am still incredulous) that you can take with you.

Don't be fobbed off with the "we'll discuss birth options at 30 weeks with the midwife" offer. As far as I know, midwives are not in a position to make decisions about mode of delivery anyway so you need to see (another) consultant.

ghislaine Thu 11-Apr-13 20:40:55

I also find this really shocking - how can he decide you should have a VB without even examining you???!!

Definitely get a referral to a vulval clinic. The Royal Free in London has the UK's experts (Prof Mclean, Prof Reid) and I think you can be referred there out of catchment because of their expertise.

Don't give up! A c-section will cost the NHS a lot less than repairing the damage done by a VB and the on-going treatment of lichen sclerosis that has been made worse by (totally avoidable) tears and scarring.

bubbles86 Thu 11-Apr-13 19:30:17

Im going to definitely fight this one. I don't think its fair my OB has decided its ok to have natural just by reading LS on a referral letter rather than meeting me in person

atrcts Thu 11-Apr-13 16:04:40

Can your Litchen consultant help you out here?

The way the obstetrician has viewed your case is shocking.

If all else fails don't forget PALS.

So sorry you're having to fight for this hmm

bubbles86 Thu 11-Apr-13 15:37:01

Im so upset!
The midwife got back to me. She said she has looked into my case. Seems the consultant has deemed my situation as ok. He has placed me back onto midwife care. I havent even seen him how would he know???
Midwife said i shouldnt worry as he knows best and not to consider the birth until we discuss birth plan at 30 weeks!!
I asked her if she understood what LS is and she said not exactly..so how can i discuss a birth plan with her??
I asked if i can choose c section. She said no it can only be done if they deem natural birth to harm me or baby!

Im pretty teary now. Called my actual family GP for his help (the previous GP i saw, i only chose as she was female not my regular GP) and il see him monday 15th. He has been my GP for 24years. Hopefully he will recommend me. Im going to contact a local vulval disease clinic as well for their help.

Feel as though because they dont understand im going to end up in a bad state. Im so scared of starting up the bad cycle of scarring around the V entrance. As its already played havoc elsewhere.

:,(

Biiig sigh

ghislaine Thu 11-Apr-13 13:35:11

Could you call the Supervisor of Midwives at your hospital and enlist her help? Someone should be taking responsibility for this.

If you can't make it to London, then the British Society for the Study of Vulval Disease maintains a list of all the vulval clinics in the UK here. This list is current as of April 2013.

I think things will go more smoothly for you if you have a heavyweight on side. If your GP really is useless, could you ask the SoM for a referral to one of the clinics on this list, or try to see someone privately?

I don't mean to scare you, but you should be seeing a gynaecologist or dermatologist every six months anyway because of the increased risk of vulval cancer that goes with LS.

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