Atrophy in Lichen Sclerosis

Hi ladies to answer some of the questions.

I haven't had a hysterectomy

I have gone through the menopause

I am about 1.1/2 stone over weight

I have IBS

I have high blood pressure (take losartan)

I have been tested for under active thyroid( boarder line as yet not on medication)

I don't feel I am very anxious- but can be a bit of a worrier

I live in Berkshire.

I am 57

I also find the soreness worse when hot and if I sweat , the patches on my upper body also get very sore when im hot.

Chrissy thanks for the hug it helps to know there's people out there that understand, and I will definitely look at the other threads on here. to answer your question on Clitoris feeling there is sadly not a lot of sensation, it is so tender. to be honest it has been sore and tender ever since I can remember this is one of the reasons that I think I have had LS for a number of years. I was sent to a dermatologist almost 30 years ago with a white patch on my back and they also looked down below as they said that area can also be affected being young at the time I didn't really know what they were looking for and was to shy to ask any questions, but I guess now it was for LS . by the time I was sent for a biopsy they said it all looked healthy and didn't bother to do one.so I just lived with the fact that I was always sore and tender in that area.

I hope this helps you ladies. take care Vicki x

Hi I have just come across this forum and have recently been diagnosed with lLS. I didn't even know I had it as I was suffering from recurrent cystitis . I went for a colposcopy, and came out of the clinic with the urologist telling my I had L/S never heard of it so looked it up and how scary and frightening Ito read. About it the worse thing being it is not curable and we have got to live with this the rest of our lives. I am very scared to what is going to happen, as at the moment I have a white patch around the ureathra nr the opening and a skin bridge at the bottom of the opening, I wondered why sex was painful! But I have been suffering from dryness too. I have been sent to a vulva clinic and they have given me dermovate which I used every day for a month and every other for another month. After a couple of days my outer vulva lost the plump tissue and now it is just half the width, I also have been put on Vagifem which has been great for the dryness. I got a uti this week which has brought some irritation with it I am thinking this is the start of some symptoms ei itching. I have been so down the last few days and can not think about anything else at the moment, so worried. My back ground is

Iam 57 , post menopause , 2 children normal birth,have vaginal atrophy , do not have any other illness apart from worrying myself silly as have been suffering from anxiety badly for the last 3 years but have not been given anything for it as GP thinks I should try to manage it.

About 11/2 stone over weight, . But think this should come off soon with all the stress!!

I am sorry for the long post but I am a new be and feel I need to talk to other suffers as when I mention LS to my friend no one has ever heard of it. It is nice to be able have support from a group feeling much the same, although reading other suffer's , I am at the early stages. Good to know we. can talk to someone else that knows what we are going through. Stay strong xx

Morning, Roselee,

So sorry you are so upset, I felt the same when I was first diagnosed with LS, I think everyone does, we all shoot off to the internet and the first thing we realize is NO CURE, second and most scary is may cause CANCER, we all freeze and panic,I have had LS for three years now, I am much calmer about it all, I use Dermovate every day, but trying to ease off now, I also have eczema as well and tend to get confused as to where the LS begins and the eczema starts, but you do get used to managing it and coping ok.

I suffered with anxiety for a long time before I got help. I take Citalopram and has given me a new lease on life, I don't say you do the same but have a word with you GP if you feel you can't manage it, or try a herbal remedy like ST Johns Wort or Calms, i do feel that anxiety does not help LS. Please take care, things will ease. Jo

Hi Rosalee,

I know how you feel - we all probably do.

I think comparing notes may well be a good way forward. I felt thoroughly kept in the dark. The dermatologist at the hospital where I was referred for a biopsy told me he would not give me the name of the condition he thought I was suffering from, because I might go on the internet and implied that my head might explode or somesuch. I felt so angry at being treated as if I were an idiot hysteric that I ask to be taken off their list and put back with my own GP (who seemed to know far more about it than the dermatologist).

If you read through some of the comments above I think you should be more reassured.

As to the OP, I questioned my GP about fusing of labia and atrophy and she said that there is a lot here to do with the natural ageing processes. Few of us get to talk this through with mothers and sisters because it is so sensitive, so this sort of discussion is very valuable.

The most difficult thing to deal with in this diagnosis is the lack of information, so hopefully we can at least remedy that by using this forum. It might be possible to set up a website or support group, but I'm not yet sure how to go about this, because everybody needs confidentiality (I certainly do).

The anxiety theme seems very common, as does the age of onset and coincidence with menopause. I asked my new GP what would happen if I did not treat it at all and he said that the area would become very itchy, scarred and painful, but did not imply that cancer was at all common (adding however, that I should get any lumps and bumps checked out right away as should everyone else whether they have LS or not).

In your mind, if you can consign it into the category of annoying and inconvenient rather than alarming and dangerous, life will be a lot less stressful - "annoying and inconvenient" is definitely the best place for it!

Please keep the information coming everyone. We will have to think what to do with it when we have a significant quantity of data.

Things that work for me:

Dermovate, Salcura Intensive Skin Therapy Spray (this stops the itching, but can feel hot for a while and may alarm/not agree with some people).

Zinc and Caster Oil ointment applied after washing on completely dry skin.

Washing with water only (always after bowel movements if it is convenient). Sometimes I take a small squirty bottle with me full of plain water for this purpose, when I am out and about, although this can be a pain to organise.

One thing I forgot to mention above is that I have fair skin which burns easily in the sun.

Keep your spirits up - it is controllable especially if we learn as much as we can about it and FEEL in control.

Thank you Jo and Margaret it is good to be able to talk, my poor husband! , he is very supportive and does put up with my anxiety but I am trying not to go on about my fear to him, so this forum is great news. I am going to ask my GP for something to help me with it as I know stress dose not help LS . My friend who takes med for stress, says they are her happy pills. Can I ask were members on the medication for stress before being diagnosed with LS or have gone on it since, It is so strange that this seems to be a common domain with LS suffers or maybe it is age and the menopause. The funny thing is I had a very stressful period for 2 mths before my LS symptoms started.

Can I ask if you use Dermovate every day does that stop you having flare ups? My doctor told me to use it as and when but I would have though if you can keep the condition from flaring then your symptoms should not get any worse.

Morning Roselee,

I use dermovate every morning, and touch wood the last flare up I had was about 2yrs ago, so try it and if it helps you stay with it, I never did have any itching just very sore and raw! Joxx

Morning Girl's,

I hope you all had a nice weekend?? In answer to Rose lee's question re; happy pills for stress & anxiety, I was diagnosed with severe anxiety & had tests done for my oestrogen levels at Christmas which confirmed I am peri-menopausal. My GP put me on Citalopram, which i'm so pleased to say has made such a massive difference to my life. It was affecting me so badly I even had to change my long term job.

I was then diagnosed with LS approx. 6 months later, but I believe I have been suffering for the last 2-3 years, due to the itching, it didn't even occur to me to have a peak to see if anything looked different or unusual, if only I had (hindsight, such a great thing).

I know the LS is miserable, but I have to say, if I hadn't been taking the Citalopram I don' t think I would be coping anywhere near as well as I am. If you feel a little anxious, stressed or a lot more down/low than usual It would probably be worth while for you to see your GP to discuss this. I was getting to the point I literally didn't even want to leave the house it was that bad. We had a spate of burglaries' in our neighbourhood at the time even though we have an alarm system on our house & garage I was so un-reasonable about it, once I got home from work on a Friday evening I would NOT leave the house again until the Monday morning & that was because I had too. I almost drove my partner to despair, what he, my friends & family found so shocking was that I had gone from being the most confident person, bubbly personality, out going chatter-box to someone who was so withdrawn, luckily due to the wonderful people in my life, they convinced me to get help which I begrudgingly did, not convinced their was anything wrong me. Wahoo !!! my life started to turn around again within a month, it suddenly dawned on me how wrong I was, I then started to piece things together & it hit me like a sledgehammer that there was something seriously wrong.

Just make the appointment, think about some of things you do & how they affect you & how you deal with them, at least then you can see your GP & explain how everyday things are affecting how you are coping with them, I know it's only a start, but it's got to be worth a try. Best wishes T xx

I was on happy pills for a period of about 6 months in 2002. I am an anxious person, but I am of the frame of mind which dislikes medicating until life is truly unbearable. On this occasion, whatever I was on (I can't remember) made me feel as if I were almost drowning, but I no longer cared - therefore I did not deal well with the issues in my life at the time.

The truth is I have ALWAYS battled with anxiety and depression and have only once had the experience of taking very carefully prescribed pills (when I was in my 20s) which allowed me to get things in perspective and also allowed me to see that I had the right to feel happy. I have been working with this, using the memory of that experience to try and prevent the need for further, perhaps less carefully prescribed, anxiety/depression medication ever since.

Incidentally, I have always had a problem with itchiness and soreness in the genital area, but white patches only developed a few years ago when I was menopausal probably.

None of us are made the same way, but we do have this annoying thing (LS) in common and it seems there are many other common factors also.

I really hope that whatever you do works well for you! XX

Margaret

Rosalea, looking back, I think I may have been feeling particularly anxious just before I was diagnosed.

Hi girls thanks for the chat, I went to my GP today to get some happy pills but I am such a wus stupidly read about them on net and thought I would not be able to cope with the 1st 4 weeks of them getting them in my system as there are some terrible stories. This is my problem I read the Internet and scare myself silly.

I am only just starting with symptoms of LS , burning in my bottom more than vulva at the moment I have no sores or cuts, I just have burning and stinging,and a tingling sensation at the moment. A little itch now and then,

Can I just ask does it spread even if you are using Dermovate, this is the part that scares me the most. I am trying to be strong, you have to don't you!!! I will get better just being able to read your comments help and give me hope, ThanksI

Really try not to worry. At first you think that it will somehow absorb all of you eventually , but it won't and there are plenty of women walking the streets who have this. It really is that common.

I had an interruption in my use of Dermovate, which meant that it spread more quickly than it wold have done I think if I'd had regular use.

Do as the doctor says with this cream - use the tiniest amount but apply it accurately on the problem areas.

Hi Roselee,

Just wanted to say....Your NO wus!! your just like the rest of us, trying to come to terms with this awful illness. The reason that we all read through the Internet is because there is just not enough information from G.P's, specialist's etc. to help us with our situation's. So we tend to try to help ourselves & learn as much as we can about what does & doesn't work for other's, at least by doing that, I've managed to start coping a lot better with my LS, If it hadn't been for wonderful ladies that are on this site I would never of thought to try Emu Oil. Infact...I'd never even heard of Emu oil before LS, so for me, reading the internet has made a massive improvement for me.

As for being worried senseless about "Happy Pills"....don't be, I know that's easy for me to say, but I really did notice a difference in my self & my attitude within a matter of weeks, sorry if I sound patronizing, I don't mean too, I know we are all different, but you have nothing to lose by trying them. I did have a few bad dreams to start with, but they soon faded, For me the happy pills have been a god send & have certainly outweighed the bad dreams.

I too am the same as you....my LS started around my back passage, with the burning & itching, passing a bowel motion was horrific, I would actually starve myself & just eat soup in the hope's it would be easier for a motion to pass. Sometimes I would be on my knees in tears on the bathroom floor in agony, not very appropriate in a motorway service stations (due to my job) I kept splitting & bleeding, which is no fun when your sat down for 10-12 hours a day. I could have kept a pharmacy going for years with the amount of suppositories I was using for piles. Now I know why they didn't work . I ended up having to have Botox injections in my sphincter muscle to help it all heal up.

As for LS spreading...if you use your cream as directed by your GP, etc. It should make a big difference, it will certainly slow it down. Because I got fobbed off for so long that my LS was thrush, piles etc. etc. mine has deteriorated quite badly, however the good news is that I'm still using the Dermovate once a day at the moment & my white patches have shrunk dramatically, so I feel there is a light at the end of the tunnel. OK we are all stuck with LS, but I feel positive that I'm getting it under control & that it's no longer controlling me.

Keep us up to date, that's what we are all here for, best wishes T xx

I've never tried Emu Oil and had a look on the Internet and there are loads of different products. Which one is the most useful an what is the most reliable source?

Hi Margaret, I got my Emu oil from Amazon, it was about £11.00 ish. It was from the Australian Body Company (ABC), it's completely pure 100% & an absolute God send, Hopefully the other ladies can post where they got there's from too. Hope this of help to you, Thanks & best wishes T xx

Hi everyone,

I have a strong feeling that I should be starting a new thread with this, because we have come a long way from the original post and this has turned into (a very valuable) exchange of ideas, symptoms. Or should we just stick with this thread because people know where the information is? Any ideas?

I want to share ideas with people about what they individually might do with the information we have collected and what may be contributed in the future.

Lichen Sclerosis (spelling?) What I am going to do to try and improve my situation:

Looking at the comments, one of the clear themes is that those who suffer badly from LS are overweight. This is logical because we often carry excess fat around the tops of thighs which will increase sweating and chafing in that area. I am making a concerted effort to lose weight by at least a couple of stone over the next few months and will monitor how the LS feels and looks before and after. I'll keep folk posted.

I have decided that to avoid quick snacks when hungry, I am giving up bread (I have my suspicions that wheat or wheat and yeast might be a problem for me). I've already lost a few pounds (I started 2 days ago) and feel a great increase in energy already.

More importantly I feel calmer and more in control - relaxed. Since many of us (all of us?) have spoken of anxiety and a possible connection with LS, this may be important. However, I acknowledge that these are early days yet and my change in mood may have more to do with taking some sort of action whatever it is than anything else. This time I will be sticking with things even if I feel my mood going down again.

I have found a form of exercise which I really love - sea boat rowing (low impact and excellent cardio vascular). This activity is also social and is not as boring as a gym. All ages/shapes/levels of fitness do it. However, that's my bag, possibly not yours, but I can't emphasise how good getting out there and doing stuff with other people makes you feel.

Very Best Wishes to everyone (please keep your spirits up now your LS is recognised things will get better even if it doesn't completely go away)

Margaret XX