I feel so angry - why did I have to get this so young.This time last year I did not even know there was such an awful disease and all I had to worry about was trying for a baby. I can't event have sex, let alone trying for a baby now. I have been in constant pain, red raw, burning, itchy and soreness since November. Am I ever going to feel and look normal down below. My labia has started to shrink. I feel like I am living a nightmare.
Sorry just needed to have a moan as I do not know how I am going to live with this for all my life and am so scared I will never be able to have a baby.
I'm so sorry hunny that you are feeling this way. I know how scared you are and I think maybe you need to see your gp and ask them all the questions. I know they are'nt all very good but if you find the right one that can help you not only deal with your problems but give you emotional support it may help.
I hope that you get it under control soon and you get the baby you so desperatly want XXX
Oh Mickey1 you poor thing, really feel for you. Have you been using aqueous cream to wash with and paladin for barrier cream? Literally pile it on if not already doing so. It won't be like this all the time, we all get flare ups from time to time, no doubt some worse than others. When do you next go to see consultant, i agree with emx have a word with your gp, I know easier said than done but try not to worry, many women go on to have babys after being diagnosed with l.s. Keep using your dermovate /Benovate as directed by dr.
Take care and keep talking. :gbs
Hi there Mickey1 my heart goes out to you. I too am struggling mentally as well as physically with this disease but am still grateful it is me and not my daughter who has it. To have it young must be dreadful.
There is lots of advice on these forums and they have helped me more than the doctors who didn't tell me much. Mine is getting a little more comfortable now, do use the steroids and lots of barrier cream. I find clothes really irritating to the sore skin have taken to wearing full skirts and not much else! :lol:
Please try to stay positive, the problems aren't in your reproductive system, no reason you can't have babies when you get this more under control. Very best wishes and don't give up! Sue.
Hi Mickey 1 . Sue is right, when you find yourself a daily routine with your steroid and barrier cream and non soap emollient to wash with, you will find things will progress and your daily comfort will increase..Mickey what you must do and it is so hard to do, is to realise that being fearful and stressed about this condition will heighten it..Sue is right about reproduction, LS does not go inside you. You need to talk to a councellor, which your doctor can sort out. It is imperitive that you keep talking to lessen your stress levels, whilst your steroid and ointments are doing their best to help you. We are all here for one another and I know how hard its been for Sue lately too so try and think a little positive. We have all been at the start of this and have had to go through mis diagnosis etc., but once you know what you are dealing with and get your mind around it you will go forward. Pregnancy wont happen whilst you are stressed anyway so, relax sort one thing at a time and take care of the body that yourFuture baby WILL need. Also dont worry about the look of you. We allhave lost bits of us and look different but sensual arousal feelings will still be there. Try checking the company that a lot of the girls use which is yesyesyes.org their lubrication is second to none and it has helped many ladies who crack,split and get dry when having sex. Take care Mickey1 and keep with us. Mal xx
Thanks for all your caring replies - it really means a lot to me. Still feeling down but am going to see a Dermatologist on Tuesday as I do not feel that the other consultant gynaecologist I have been seeing is very helpful. I went to the doctors yesterday to change my steriod cream. I have been using Trimovate cream but am going to start using Dermovate ointment from tonight. Am in a lot of pain and am really worried as I now have a small black spot on part of my vulva, my labia is shrinking and have lots of tears all the way up to my bottom. I feel so scared. I just can't believe this is happening to me when I am so young. It is funny how one minute life can be so perfect and the next minute your future does not look so bright.
I might book an appointment with a counsellor. I will see how I am after I see this dermatologist who specialises in vulva LS.
Thanks again for all your lovely messages xxx
Mickey1, There are unfortunately, loads of younger women and even children, with this condition so you are not on your own love. Good luck with your dermovate, but pay heed to the other girls they are right. To heal your sores and splits you should try Paladin. Loads of us are healing on the surface because of it. Your steroid will kill the growning lichen underneath the surface you need to treat above. You did not mention you were using a barrier ointment or an emollient to wash with. These two products are vital to give you ease. Good luck with your dermatologist and Keep Positive. JKx
hi Mickey1, Glad you are feeling slightly better in yourself. How often are you using the dermovate - only put a very small amount on as it will thin the already thinning skin. Jennie k is right loads of barrier cream is a necessity if haven't already, try it, it really has helped so many women already. I cannot stress enough about using something like aqueous cream to wash with, it really does help. No soap whatsoever and again you can use this and paladin as much as you like, but again the dermovate needs to be used sparingly. read the other postings from a while back - there are so many good tips, eg using a barrier cream (paladin) before you get in shower, so shampoo can't get any where near your nether regions - also if you go swimming use the barrier cream as chlorine is a 'pain in the backside' - pardon the pun! :roll: No jeans, cotton knickers etc etc.
Hope the dermotlogist gives you more help. take care.
gbs
Thanks girls. I did start washing with Aqueous cream but things started to get worse so have just been washing with water. Should I try washing with the aqueous again? What barrier cream should I use and when should I put it on if I am putting the Dermovate on once a night. At the moment I only have a shower once a day as I was told to stop having showers twice a day as I was over washing. I am on medication which helps with nerve pain and helps me get some sleep now.
I have not been able to wear jeans since November and sometimes can not even bare to wear cotton knickers. I have not had sex since the end of September and things just seem to be getting worse, week by week. I am very lucky as my husband has been so understanding since I had my miscarraige and all this started up. Even though he is brillant this is putting a strain on our marriage as we can no do what normal newly weds do.
I have started a diary to see if anything flares it up - like things I eat. I am also having reflexology and acupunture once a week which does not seem to help.
It really helps hearing everyones advice xxx
Hi Mickey. If you read back over old threads and answers as gbs has said you will have all your answers. What comes over to me is that you are trying to get your products to work PDQ and that is not the way it is...Be patient and dont give up on something after a few days...If you use the aqueaus to wash with firstly- rub a good blob into watered hands and then put your hands back under the tap for a quick rub together , you will see that the emollient is smoother, then, gently smooth on you and then just rinse with warm water. The emollient will soften as well as clean. Just water will not moisturise you will just get dry. The paladin as you can get in the UK on ****.
Take your time - de stress - use your steroid once in the morning and at night for a month at least. Your aqueaus, use every wash. If you are showering put it on before you shower or if you have to bathe then smooth some on before entering the bath it will help to protect you. Dermol200 shower cream is also goodIf you do those things as gbs says the soap stays out your nether regions. Use your barrier as, often as you like. With time and understanding and doing as we have said about healing yourself first and not distressing and rushing things you Will see an good improvement. Stop thinking anything you put on has chemicals like lanolin that can harm. Babies bottoms are delicate and nappy creams and E45 has lanolin. If you take pills of any kind you could have a reaction. I am 60 and have used lanolin all my life. If its good enough to treat psoriasis with E45 cream then its good enough for us and the risk is so tiny. you could get a rash from any foods or prescriptive medicines so it is all a lottery.
Mickey lobe, it wont do you any good getting upset that you have it so young, because you have it and you have got to learn how to make the most of your life and not be negative always. The girls are really giving you such good advice. Believe in them. Look at old threads, you are not alone Mickey we are all in the same canoe!.. Love Mal ( the nagger)xxx
(Sorry but Patient Admin have removed either a telephone number, an email address, a postal address and or web address, from this posting, as it is the policy of Patient UK not to publish these on this forum.
If you wish to communicate directly with people, you should register, for free, with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail.)
Hi again,
Mickey1 I use aqueous cream all the time - for washing - moisturising - after i go to the loo - etc, Sometimes i don't even use water as it's water based already, just pat dry. I've just had a biopsy and believe me it's sore but using just water will make it even sorer - at the moment i can't use the paladin or the dermovate so i am relying on the aqueous to help heal and keep the ls and possibly lp at bay.
You really do need to talk to someone face to face about all your feelings. Really sorry you've gone through a miscarriage, it's so hard to deal with the loss and imperitive that you talk it through with someone who understands what youve been/still going through. Please follow peoples advise about controlling your ls - it will improve if you work at it. take care sweetie.
gbs
Thanks Mal and gbs - will start doing as you say. I need to start pulling myself together and not give up every time it gets worse. gbs hope your stitches heal quickly - they must be very painful. How long have you guys had LS for?
It would be so lovely to have a LS support group near where I live to speak to women like you xxx
Hi Mikey1,
I really do feel like you at nearly 34 I never imagined I would be going through all this and my body has already been through such a lot with pregnancies, losses and gallstones to name a few I feel like the walking wounded and everytime things start to look better something else crops up!!! I know stress is my biggest problem and I think once my diagnosis is sorted I may talk about going on the low dose anti d's as my gp had tried me and I did'nt like them after my dad died but if a low dose keeps me calm enough to slow the flare ups then I will try this route. Chin up hunni you are doing really well you have so much to contend with XXX
[quote:6d0822f136=\"Anonymous\"]Thanks Mal and gbs - will start doing as you say. I need to start pulling myself together and not give up every time it gets worse. gbs hope your stitches heal quickly - they must be very painful. How long have you guys had LS for?
It would be so lovely to have a LS support group near where I live to speak to women like you xxx
Think i've had it for few years but was only diagnosed last year - which was a relief really as you think you're going mad with all the itching etc. I was thinking all sorts of irrational things like std's (even though hadn't been with anyone else)! 
Hallo gbs
You seem to be coping fine after your op. You did not say how many biopsies you had or from which part of the area. I can not tolerate anti-inflamatories so I used 'panadol extra' and they worked.
Emx appears to be doing really after 3 biopsies.
I have to wait 6 weeks also for the results but was kept busy with my wounds. Mind yourselves. I found lavender in the bath helpful. Not allowed to use salt. wishing uou both a good healing and lots of patience! May
[quote:00dbf7b489=\"gbs\"][quote:00dbf7b489=\"Anonymous\"]Thanks Mal and gbs - will start doing as you say. I need to start pulling myself together and not give up every time it gets worse. gbs hope your stitches heal quickly - they must be very painful. How long have you guys had LS for?
It would be so lovely to have a LS support group near where I live to speak to women like you xxx
Think i've had it for few years but was only diagnosed last year - which was a relief really as you think you're going mad with all the itching etc. I was thinking all sorts of irrational things like std's (even though hadn't been with anyone else)!
I have had it for about 3 years but formally diagnosed 18months...Like gbs, thought I had all sorts of irrational ideas as to what it was. There really needs to be more openness with this complaint. I have spent almost a whole year learning about it and asking questions but there seems to be that point everytime when you come to a dead end. We can only try to help each other. Saying to us the words No Cure really p....me off. I was always taught there was no such word as no, there is always a way and that I believe that will happen. Keep going.Mal
Hi there Mickey1 hope you are feeling not too bad.
Congratulations on getting an appointment with a specialist dermatologist so quickly, hope she is able to help a little.
It is good to know there are other women out there and to be able to talk even just online. I have joined a support group WMVP for vulval pain on Yahoo Groups, they are lovely but I have not met anyone with LS sadly. I often wish I felt able to tell family and friends but it is so difficult, only my partner knows. Keep talking even if only to us, if you can find a good counsellor even better.
My partner is lovely but finds it difficult to talk about and we have not been able to have sex for over a year now. That is bad enough but when you have miscarried and desperately want a baby it is just heartbreaking. Don't give up, treat yourself gently and take your time getting better. Best wishes. Sue xx.
Went to see the dermotologist yesterday and she does not think I have LS but psoriasis and vulvodynia. The other consultant diagnosed me with vulva LS and pudendal nerve damage. Not sure which consultant to believe - they both do not want to do a biopsy as they think it will just make things worse as it is so red raw at the moment. I just don't understand as I have lot of white areas on the tears and one small part of my labia has shrunk. She has given me instructions on how to wash, use the steroid ointment, use the ointment to numb the area and use the barrier cream. I will make sure I follow her instructions and not give up.
I am also worried this burning pain and bladder pain will never go because of the vulvodynia. It constantluy feels like I have a urine infection as I contanstly need to urinate and when I go I really have to push and stings like hell - they have tested my urine and I don not have an infection.
She says that if the pain does not get better in a few months I need to see a consultant who deals with chronic pain.
Anyway better start to get more positive as I am sure I am making things worse by stressing and crying all the time.
Thanks for all your messages and support everyone - it has helped me so much xxx
Hi Mickey1 just read your post, not sure whether it's good news or bad, I think I would be even more confused.
If it isn't LS then probably good news, as if you can get the psoriasis under control maybe the vulvodynia will ease as well. Personally I would wonder why my labia were shrinking if there is no LS and you are young.
Still, sounds like the treatments are similar so good luck with them. Don't know what else to say to help, just hang in there!
I have found writing things down helps when dealing with consultants. Otherwise I forget what I mean to say due to the stress of it all. Very best wishes. Sue.
Hallo mickey1
go to ****
select the first option on left side of page = ****
select Message Board on left side of page
scroll down the page and under the picture of the flowers select message board again.
Very relevant info for you concerning LS and bladder infections. Most of us visit this forum and find it and the woman who set it up Marlyn so helpful and encouraging.
(Sorry but Patient Admin have removed either a telephone number, an email address, a postal address and or web address, from this posting, as it is the policy of Patient UK not to publish these on this forum.
If you wish to communicate directly with people, you should register, for free, with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail.)