Lichen sclerosus and pregnancy

Hello to everyone this is my first time posting about this! 

Im 23 with a nearly 2 year old son. I was diagnosed with LS 5 years ago because I could no longer have sex and was waking up every night in pain and feeling so itchy. I was prescribed Dermovate steroid cream which helped a lot and helped me to get back on track with my usual life. 

However when I found out I was pregnant I was worried what effect having a my son naturally would have on my body. My gp at the hospital had no idea and basically fobbed me off like I was making it up. So I trawled the internet finding info about people my age (21 at the time) with LS and going through a pregnancy whether it be problem free or worse than before. 

I couldn't find anything at all! I was refused a planned C section so had to face the facts that I would have to have my son naturally and face whatever problems may come. My biggest fears were either my son getting stuck or not healing right or over healing. 

I made the decision to have a water birth in the birthing pool at the hospital. I'd read that this could help soften the skin and help with elasticity. On arrival at the hospital the No-Nothing GP suddenly decided she knew everything about LS (she repeated everything I'd already told her) and said I could labour in the pool but would have to come out just before my son was born to be monitored. Great. 

I have to say that labouring in the pool was the best choice I could have made, no "tightness" complications, easy to get comfy, free to move as I wanted. 

After the birth I had to have stitches. The most painful part! 

Despite all all this I am still "ok", I've had no flare ups or problems in the past 2 years since having my son. 

I just wanted to share share my experience as I couldn't find anything when I was in need. If anyone has any queries if be happy to help at any time. I feel as though I've been to hell and back with LS as most "sufferers" have I guess but I've come through it with a happy healthy little boy. Most days I don't even think if LS any more there is hope for anyone with this condition that it will ease off and you can feel "normal" again

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That's a great story, Sophie. I'm sure it will make someone's day. I'm old now, but I had LS when I was little and was already having trouble through my twenties. But I wasn't diagnosed and I wanted kids, so I don't remember it crossing my mind that I could have complications. I had my first naturally (I mean no drugs) but my old-fashioned GP used forceps and did a big episiotomy. It healed fine, but whenever my perineum has torn, it's always along that line. Part of why I never asked a doctore about the cracking and the white patch there was I blamed the combination of psoriasis and the episiotomy. Live and learn. I don't even recall if I was cut while having the second kid. I do remember the Ob/Gyn shouting at me to stop screaming... Anyway I didn't have any vulvar problems after that one either.

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It's nice to know that it doesn't always cause problems I was so worried I'd be "ruined" for life because of LS and I wish I could have found someone else saying it was ok hopefully I can help someone else that is worried, and your reply will too they say episiotomies take longer to heal too so I'm glad I tore naturally it seems that there are a long of weaker points after getting LS such as the perineum. 

Its not not the end of the world having a baby while having LS...yay!

Hi Sophie--Good for you in being diligent and assertive about this disorder in your circumstances.  I am aware of some research that finds that autoimmune illnesses generally go into remission during pregnancy and nursing due to the mother's down-regulation of her immune system (so that the baby isn't rejected as foreign or not-self cells in her body).  I wish that we could find and market that substance that down-regulates our bodies because most people (I did) have a suppression of their symptoms during pregnancy and lactation.  I don't know if you found this to be the case, but sounds like you made a number of great decisions during your pregnancy and birth.  It's hard to advocate for yourself during this time as there is so much pressure from the doctors to conform to what they want.  --Suzanne

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That makes so much sense, Suzanne! And is that not essentially what steroids do?

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Nice to read a good storie for once sophie. This will help so many others like yourself. I am glad you had a healthy little boy. Thanks for sharing.

god morrell....that got me worked up....sorry for the way you were treated.

absolutely....way too much bullying arising from uncertainty....best to defer to the patient and support them in their own instincts and tendencies....eg by asking how they feel ...what they would like and the options...and really not intervening....very few situations were intervention is really needed.

mind you when it is - theres often no-one there eg post delivery continuous bleeds. i'm ashamed of our current maternity services. processing people!

CONGRATULATIONS SOPHIE ON THE BIRTH OF YOUR SON!

Its never too late to hear that again is it?!

Thank you so much for your story.

I had a wonderful birth with my own daughter...now nearly your age. As I knew the system and planned to have a group of women in attendance I phoned up when I was so many centimetres dilated and informed them of my progress and that I'd be coming in with a group...I asked "shall i bring folding chairs?" This was a distraction technique which resulted in the response that of course they had enough chairs (!!) ....so no issue about the crowd i was bringing in!! we all had a lovely time.

Thank you again for your story xxxxxxxxxxxxxxxxxxx

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It would probably be classed as "wrong" to use some hormone produced by pregnant or lactating women, I wouldn't mind if it meant the treatment helped greatly but there's always someone to oppose it

I was fortunate not to have any problems during pregnancy and my LS stayed away it was just the uncertainty of birth and afterwards that concerned me, even more after my GP and consultant had no clue as to what LS is and the complications I could have had. Fortunately I tend to do a lot of research before I do anything so I was up to the challenge I would definitely recommend a water birth/labour to anyone with LS. I was only in labour 6 hours and even then I had to force the midwives to believe my son was on his way (they wanted to check me again in 3 hours) quick jump out of the pool and within an hour he was here

i suppose the midwives an only do the jobs they are told to do, so many pregnant ladies and not enough midwives being employed. In my opinion the midwives were very helpful it was the higher level doctors and consultants that were clueless and couldn't help - I couldn't believe it when I arrived at the hospital in labour and they just repeated everything I'd said previously as if she was informing me. Speechless springs to mind!

Thank you  

Thank you and congratulations to you as well  

hahaha at at least they knew to expect an entourage  

Hi Sophie

I have been to the hospital today to see the consultant as i am 18 weeks pregnant, to discuss my LS and child birth. I came away not knowing the pros / cons of having a natural birth or what the implications could be, only to be told come back at 36 weeks and we will make a decision then.

I decided to come home and do some research and your post was the first i've read which has made me feel a whole lot better. I didnt even think about a water birth and how that could help to soften the skin, I will certainly request this as part of my plan.

Thank you for your post, it has really helped install confidence within a natural labour.

Its good to hear you and your son are fit and well

Xxx

Hi Sophie

My wife, 29 yrs old, just being diagnosed with LS last week. She is currently using Clobetasol twice a day for 1 month. We are at week 2.

However, my wife just use pregnancy test stick and the result is positive. She is pregnant.

We dont know whether we should continue using Clob or stop. As our next appointment with our Derm is in 2 week.

Please anyone of you who has been through this case or has any ideas please share with us.

Will the use of Clob topivally harm the baby??

What should we do now?

Thank you all..

Phong

You will probably get lots of good advice on this but I personally would ring my own GP and discuss this with them.

Our GP does telephone appointments where they will ring you at a convenient time to yourself.

Always better to get professional advice when pregnancy is concerned. Congratulations by the way.

Tell your wife to keep the area moisturiser well for now until you have found out. The other thing you can do is read the instruction leaflet that came with the ointment. If you don't have it use Google.

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Hi Phong

Congratulations on your pregnancy news, such wonderful times are ahead!

My doctor advised me to continue with the steroid cream but I would seek medical advice on your specific treatment plan.

I was extremely worried about my LS and childbirth but I'm very pleased to say I was absolutely fine. I ended up with a forcep delivery which resulted in me requiring a controlled cut, I have healed fine and my LS doesn't cause me any issues.

I hope my story gives you some reassurance and good luck for the future.

Nikki

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Great advice Tat.

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Thank you Chrisy and Tat,

Well our usual Derm (who treat our LS) will on vacation for the next two week. I just phoned to his secretary. She said that the doctor said her via the phone that we can continue with Clob as we use topically.

We will see a new Gyon next Wednesday for advise. Hopefully he knows LS.

Thank you. May I ask you have your LS in remission at the moment Tat, since your childbirth?

Any additional advice from you guys is very valuable to us.

Best wishes,

Phong

Hi, yes my LS was in remission during my pregnancy and after childbirth but I do experience some itching symptoms. I'm more than happy to help, there was not a lot of information available.

Hi Tat,

Yes it's true that finding someone ever been in our case is so hard. That's why this forum is a godsend to me.

May I ask you some more questions Tat? You have been so kind and helpful..

Are you currently use steroid as a maintenance? What type of steroid is ít? How often do you use it?

Do you plan to use steroid for maintenance forever or just stop and use when you have symptoms?

Wow, thanks again all of you,

Best wishes,

Phong