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??

atrcts Wed 10-Apr-13 12:52:57

I don't have your disease but it does sound like you have a very strong case to have a C section.

It's terrible that, just because the midwives have never heard of your disease, that you are not supported more fully. When you say the midwives can't help you do you mean that they are not replying to your calls or just that they have no answers?

It seems unprofessional if they have no answers, to not refer you to someone who DOES have answers. It may be that you need to go through your GP and explain the situation to get a written referral to a consultant. I

In your position I would also be interested to find out what your sclerosis consultant has to say about pregnancy and childbirth in your case? Almost certainly the obstetrician will want to speak with your consultant, they do this routinely but especially if they don't know what they dealing with!

Good luck with it. If all else fails and you get nowhere with the GP then it would be worth contacting your local PALS (patient advisory liaison service) at the hospital you will be giving birth in. They will advocate on your behalf and will know the right channels to contact.

bubbles86 Wed 10-Apr-13 14:08:55

Thanks for replying

The midwives keep advising me to wait for a letter from a consultant. They cannot give me any advice no my illness as they havent heard of it.
I went to see my female Doctor GP yesterday for help, she told me to wear lose fitting clothing and no scented products. This doesnt solve my tearing at the moment as I already take these precautions. Also about being referred to the consultant and any help, she just said to wait for my next midwife appointment next month and to chase them for my consultant appointment

Im going to take your advice and go straight to my local PALS at the hospital.

Feels like ive just been left to it with this pregnancy. Bet most women get that feeling though

If anyone has been through the same please let me know what birth you had

Coffee1Sugar Wed 10-Apr-13 18:15:50

Can you ask your dermatologist to write to the obstetrician/midwife?

mayhew Wed 10-Apr-13 18:26:33

I am a mw. I would refer you for a consultant appointment urgently to discuss the safest mode of delivery. All obstetricians are also gynaecologists and they will know about this condition although its more often seen in older women (which is why mws might not know about it).

Who diagnosed you? It might be helpful for you to be in touch with your specialist and ask them to write a letter you can show your obstetrician. In my experience, it is rare for an obs not to follow the advice of a fellow specialist.

ghislaine Wed 10-Apr-13 20:28:12

I have LS (suffered since I was 24 but not diagnosed until I was 36) and had an ELCS for my first child last year. I'm sorry you are getting the run around from the hospital, it must be very worrying for you.

In my case I had been seeing a gynaecologist specialising in vulval disease for a while before I got pregnant but she had already told me while TTC that a VB was not a good idea and she wanted me to have a section. I also saw one of her colleagues while she was away, and that gynae told me that a VB was "extremely inadvisable". They each wrote me a letter which I took to a consultant appointment at 18 weeks (I had requested this at my booking in and the midwife was very accommodating). My section was agreed in two minutes flat. It gave me a lot of peace of mind. The actual section was a very calm experience and I recovered very quickly.

Are you in London or can you get to London easily? Please PM me and I will give you the names of these gynaecologists. My main gynaecologist said that a letter with her name on it would guarantee me a section in any hospital in London. Definitely contact PALS as well, you shouldn't be getting the brush-off.

I did find that none of the midwives I met knew anything about LS and pregnancy but when I explained the condition they were very quick to agree that I shouldn't have a VB (the conversation usually came about because my CS had been agreed relatively early on). You probably already know this, but LS gets worse around scars which of course we are much more prone to. Also if you have any sort of narrowing of the vaginal entrance (and the inelasticity that goes along with that) that should be another good reason for granting you a section.

Please let me know if you want to know more about my experience.

bubbles86 Thu 11-Apr-13 10:19:20

Thanks Guys for your replies, made me feel more positive

I dont have a Specialist or a Gynaecologist for my LS.
I was diagnosed in 2008 after going to a different hospital in another city for a biopsy. My female gp confirmed the results to me, gave me steroid cream and advised me of some do's and don'ts. she also told me there was no cure and that was that. never seen a specialist since.

This is how its been so far....

JAN had booking in app't with midwife - she said she would refer me to consultant with details of my LS for consultant led care. She hadnt heard of LS

FEB had another midwife app't - she said if i havent heard anything yet to just wait, i Will get a letter from consultant soon. she hadnt heard of LS either

9TH APR been to see my female GP to explain tearing has gotten worse and could she please chase up the consultant as im getting anxious now. She had not heard of LS in my age. She said to chase my midwife at my next app't (25th apr) about the consultant app't

I have just called PALS - they have nothing on file for me to see a consultant sad !! they said my GP should chase consultants for me.

My GP says my midwife centre should chase the consultant.

I have just spoken to one of the midwives at the local centre and she says not to worry about chasing until after 25 weeks pregnant as consultants dont usually look at cases untill after 2nd scan at 20 weeks. I did stress the point im getting anxious now and I dont want to leave it too late into the pregnancy. She is now calling the ante natal clinic to see whats going on with my case. I had to spell lichen sclerosis to her and explain what it was. Hate explaining what it is as its embarrasing especially when the postman turns up and stands besides ya needing something signing!

Feel as though because they dont know what LS is, they arent seeing how serious is it like me.

Just a waiting game....

bubbles86 Thu 11-Apr-13 10:24:21

I live in Yorkshire / North Lincolnshire. We dont have fantastic hospitals where I live sad
Sounds like London offer alot better care and support!

Novemberish Thu 11-Apr-13 13:08:09

I don't have dcs so can't really help with the birth part but I do have LS so can absolutely sympathise with this. I attend a specialist gyno clinic fairly regularly (tbh this is just one of a multitude of problems in that area - I really hit the jackpot sad) and have been told by the doctor there that I should never let the LS be a reason for putting me off having children because they can arrange the necessary support and that I would be a good candidate for ELCS.

It seems this is taken seriously in some areas so you should be able to get the help you need. I'm sorry it is proving so difficult for you.

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.

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

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 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

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.

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.

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

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)

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.

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.

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!

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....

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

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

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

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.

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

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