Change of steroid cream I'm worried.

Thank you Lodge.

Didn't know what to do. Will use the new ointment next time

I'm due for an application and see how I go.

Cheers.

Hi Lodge thank you for your reply. Feel a little bit better that

someone else uses a milder steroid ointment. It's a sortie

when you have to alter medicine.

How long have you had LS?

Cheers.

Hi Kay,

I was told in 2011, but probably had it for quite a while before that.  

If the milder steriod works for you, then it is probably better to use that. Good luck.

Hi Joanne

thank you for replying that sounds so positive. I was concerned

It would undo all the hard work.

Do you follow a sugar, wheat and dairy free diet. I do and I think

I have had this for years but i'm now 55 and like many others

The menopause has brought this on.

Thanks again.

Kay

Hi kay, no I don't follow a completely wheat, dairy or sugar free diet but having said that an overload of sugar sets my LS off so am careful not to have too much. I am 47 and also sure that it was a change in hormones, ie. The peri menapause that started LS off for me and any stress or worry seems to flare it up. At first I had to watch what I wore, anything tight down there would cause a flare up but I feel that I manage it much better these days and tend to wear what I want now. Summer is best for keeping this in remission as I can wear longer skirts/dresses and often go without underwear if possible.. I no longer worry about it and it's not on my mind constantly as it used to be.. Good luck with the change in creams and let me know how you get on - Jo

Hi Jo

Thank you for replying. I have changed to the moderate steroid cream.

Did that last Thursday. It seems ok. I can't were underwear at the moment.

I'm applying the Estrol cream. And hoping that the LS won't flare.

I will keep you up to date as feel it will really help me. Have like many

Others can't believe such a disease exists.

Thanks again

Kay x

P.s. slight personal question hope you don't mind are you suffering from any shrinkage of your labia?

Mine has lessened. From what I am reading this seems to happen independently of what you do to try to stop it happening.

Cheers thanks again Kay x

Hi kay, I do have a slight shrinkage of the labia but nothing like some of the ladies on here. I think itching causes shrinking but I always managed to resist the urge as mine was often more sore than itchy. I 'm not sure that it keeps shrinking when it's in remission. I just try to stick to a simple regime of washing down there morning and night with an emollient.. (dermavate cream works best for me) and steroid cream 2 to 3 times weekly and during a flare up every day sometimes morning and evening. It's trial and error I think kay, discovering what works for each of us.. - Jo x

Epiderm not dermavate sorry xx

Hi Joanne

The dermotologist has just prescribed Epiderm find it really good. The regime you are following sounds just like mine and touch wood will continue to keep calm. I have had sencertivity under my bust recently which is new but have had this before on my bottom it went away.

My mum had this problem but I didn't find out till I spoke to my sister who lived with mum and dad until my sister got married at 40 my mum started with it in her fifties.

I don't itch just sore which was bad before the Dermovate. I have had a stressful life think that has played its part not handling it well tend to beat my self up about stuff just like my mum did.

Thanks again it good to find help only people with this problem can understand.

Keep posting stuff

Kay x ps I live in the uk.

.

Sounds as though you've had it rough Kay. I am quite stressy with anxiety and have always been hormonal especially in my 30s but no one in my family have suffered with this..The sensitivity you mention sounds strange. I had really sore painful inner thighs, almost chapped just after being diagnosed with LS but doctors didn't relate the two. I have since seen a few ladies on here complaining of the same thing so must be something to do with the steroid cream.. message me any time if you want to talk kay. I also live in the UK.. - Jo x

Hi jo

Think the sencertivity is to do with diet. Yesterday I had things I don't usually have and my body took on extra water so everything was tight being careful today the feeling has almost gone.

I get painfully skin to all linked to diet.I have food intolerance.sound like a right crock. I I have found keeping thing calm does help do read a lot about Buddhism.

All calm down there have decided to introduce the weaker steroids cream slowly and if things keep calm get ride of it and only use in times of flare up.

Cheers last x

Cheers Kay should have read. X faze out Dermovate.

Hi kay, yes diet has a lot to answer for doesn't it.. Pleased all is calm for you now.. A friend of ours uses Buddhism as a means of relaxation/ destressing and it certainly helps him. Keep doing what's good for you Kay. Where abouts in the UK are you? - Jo x

Hi I live near Manchester. We're are you?

Kay xx

Hi kay, I'm in North East Lincolnshire, near grimsby.. are you having trouble sending messages? X

Hi jo

Yes sent about 4 messages to Shaylee and they have been deleted.

I have no idea why. The first one mentioned a trade name but the rest were fine. Feel a bit concerned. Can you ring and speak to the team and find out why?

Kay xx

I meant I could ring and talk with the team.

Kay

Hi kay, I've got no idea how you would contact the team.. yeah maybe using a trade name was an issue but wouldn't have thought they would block other messages.

Maybe try and go back to when you registered and see if you can find any numbers for customer service. Good luck - jo xx

Hi been back to my account and can't find a way of contacting them. But the last message to you hasn't been deleted but all the messages to Shaylee have been deleted may be her age.

Just started a discussion box about deleting me!!!

Kay xx

Hi Kay,

There is an FAQ/Help section linked at the bottom of every page in the forums to 

https://patient.uservoice.com/knowledgebase/topics/59133-discussion-forums

This includes info on how to contact me and reasons for posts going for moderation and/or getting deleted. I have sent you a Private Message about your posts.

Regards,

Alan

Goodness Joanne I live between Grimsby and Louth! I haven't posted on here in quite a while but I try to read as many threads as I can and spotted you here. I'm a bit older than you at 57.

Hi Chrissy, small world isn't it.. youre not very far from me at all.. I too try and keep up with the issues posted on here.. It helps to speak to people who are going through the same and like to share my experiences and also try tips from other people as I find many health professionals have very limited knowledge of LS..

Jo

Indeed! I can't help wondering if we've seen any similar medics. Particularly anyone of any use! ..... 

Hi Jo

Just like to say have introduced the milder steroid and it seems to be ok.

I'm washing am and pm with epidermal and rinse with water after every toilet break. Still going commandos and watching diet.

Had a bit off stress but managed to keep a lid on my emotions. Hope you are keeping well?

Kay. X

Hi Chrissy, I've just changed my consultant at Grimsby hospital.. I know we can't really mention any names but I feel that I get better, more consistent care now. I am now seen every 6 months and they examine each time.. he also seems more clued up on LS as I feel the last consultant and any GPS I've seen lacked knowledge. Do you come into grimsby or do you go to louth? - Jo x

Hi kay, so pleased the less potent steroid is working for you. My LS has flared a bit over last few days but seem to be getting it back under control. Apart from avoiding trousers and going commando i have bought some organic apple cider vinegar and have been bathing in it. Completely eliminates the itch.. good as a diluted rinse after using loo etc. Hope you get your stress under control, it plays havoc with this doesn't it.. I deserve this set back really as been overloading with sugar lately so have had to cut it right back. Speak soon - Jo x

Well now that's interesting to me. My gp referred me to Grimsby hospital for biopsy to confirm diagnosis. This is a few years ago now. It was a pretty horrid experience. I was seen once afterwards with the results, prescribed Dermovate to be on repeat with basic instructions and that was it, I was on my own! He couldn't answer any of my questions as to my specific symptoms but just had a set speech about 'this is what you do for LS'. He couldn't deviate from it and I had no faith at all. Relating the whole unsatisfactory experience to my gp who admitted couldn't answer my questions either my surgery researched specialists for me and made me an appointment at a vulva clinic at Sheffield. I attended there satisfactorily for 3 to 4 years but they signed me off as I have no fusion and there were no signs of the pre cancerous changes. There wasn't really anything more they could do for me as I'm managing pretty well. Biggest problem for me was atrophy and I have nothing left now so that's that really. So I'm on my own again now. If I'm honest I'd like someone else to be looking it over now and again. But I can get back to the clinic at any time if I think there are any worrying changes. I have a special number to ring as an existing patient rather than have to go back to the beginning again. Not been for a couple of years now.

Sounds like your GP was very helpful and considerate.  I was told I had LS from a gynae just looking and he sent away with Locoid cream to use daily for 9 weeks.  He saw me once more and just said use it as and when required for maintenance  That was in 2011 and I haven't seen any one since.

My problem is the same as yours with severe atrophy - nothing left down there really and I do still get quite sore just inside.

It is all very depresssing.  We have a new female GP and I am going to try and see her about it and ask for another referral to a gynae. 

Hi jo

Well had too mix things up with the steroid cream as using the mild one caused my labia to lesson . So I have gone back to the stronger steroid ointment for a while.

I don't have itch but was very red and sore but now the soreness has lessened. I was wondering after reading other posts what happens if you lose your cliterous and labia can you still have intercourse.

It's so depressing.

As for my diet trying 85%dark chocolate seems to be ok. It's stress that's the worst and red wine for me.

Keep talking helps a lot

Kay xx

Hi Chrissy

I was wondering since looking at my lady parts disappearing. What is it like? how do you cope when things disappear? I went through the menopause at 52 now 55 and the LS has been very active for 9 months.

use estriol cream, emuaid, bicarbonate wash diet restrictions together with strong steroid ointment but shrinkage keeps on coming.

Daunting condition.

Any help much appreciated.

Kay

Hi kay, I keep wondering about the atrophy (I think that's what they call it). I can't remember what it was like before all this. I don't seem to have it affect my clitoris but i dont seem to have much labia and I can still have sex as long as I shower and cream up straight after.. what a bloody palava.. It's good to talk to people who understand

Jo x

Hi Kay

I really wish I could tell you ANYTHING that would help but I don't think I can. I'll try and explain...

I have NEVER had any discomfort from my LS! Not itching, soreness, swelling, nothing. And I'm very very grateful believe me. I simply noticed some whiteness which worried me, must be around 7 years ago now. And around the menopause yes. I'm now 57 and still majorly hot flushing. So I had it investigated and diagnosed as I've previously described. I was given Dermovate to 'relieve my symtoms' but as I didn't have any that gave me something of a dilemma. But the shrinkage of my labia minora became noticeable quite quickly. When I finally saw a vulva specialist I felt I could trust she said I must use the Dermovate for maintenance despite being asymptomatic. The shrinkage coninued apace. At first I berated myself that if I'd used it from the beginning I would have saved my bits but I don't now think that is the case. Regular use did not halt the disappearance at all and now there is nothing and I still have NO symptoms. So I've never felt the need to try any of the various unctions or procedures for my relief although I do use Aqueous cream just to keep things comfortable for movement as I simply don't fit together in the same way any more.

But other people talk about their bits disappearing through fusion which is NOT what happened to me at all so I'm not sure which you think might be happening to you Kay. I'm fascinated to hear of the people who are having success with the bicarb bathing where it is helping to unfuse their fusing and is returning something of their labia to them. But I don't believe it is of any help to me. I call my disappearances 'atrophy' rightly or wrongly I don't really know but I wish to be clear that my loss is not through fusing and to me the word atrophy means withering to the point of disappearance.

You see, my clitoris is getting smaller too. Many people say this and usually its because it is becoming buried under fusion of the hood or somesuch. Again this is not true for me but it is actually decreasing in size. I still currently have sensation. Not a clue as to what the future will bring because NO one else seems to be quite like me which is a tad lonely actually.

So that's what it is like for me. As to coping, well I didn't very well. I was in quite a state at the thought of losing everything. I came on here searching for others as we all do, couldn't find anyone who could quite relate but lots of nice people all the same. And now it has all gone I've simply had to accept it though it's been a while coming and maybe I'm not quite there even yet. But I AM inordinately grateful not to be suffering the itch, soreness etc experienced by lots if not most of the other ladies here so I do count my blessings.

Wish I could offer helpful suggestions Kay but that's just not in my experience. Love to keep in touch though and wish you every success in finding something that helps. X

Hi jo

Nice to here from you. Been re reading our discussions. It's so difficult to really know how to treat it.

I went back to the clob for 3 applications 2 days appart.

Then tonight have used the mild steroid. Looking at my lady parts think they needed a rest from clob. As for diet not sure it has any influence on the LS. Just know I need to eat well for my IBS. But one thing I'm certain of stress has a big impacts. It's comforting to be able to swop experience

I can still have sex. And as long as I use the clob it keeps symptons at bay. I don't have the itch but have disappearance of labia.

Will keep talking .

Thanks again really helps.

Kay xx

Hi Chrissy

Thankyou for replying. My LS had no symptons just a grey colour on my labia. Then after intercourse my skin split. I was given clob and then it became sore and now 9 months later I have shrinkage of the labia not sore sometimes the skin wrinkles but clob and bicarbonate seem to stop this.

It's so sad as you say it's lonely you can only talk to people who have it as they understand. The distress it causes is unbelievable. I have finally calmed down. Although I have no confidence that it won't flare up its like a ticking bomb. I try hard now to get on with life and just hope I will be able to cope.

Thankyou again.

Kay xx

Just sharing the distress of having such an intimate and frustrating condition is a help despite differences between us all.

Chrissy X