Lichen Sclerosus and Lichen Planus - OMG ITS BACK

Women's health
1

Hi

I was just coming out of a terrible flare up for 2 days.  And today I went to the doctors to get some anti depressant pills.  I then had to go to the dentist.  I thought I would have a coffee in costa.  I saw a very small granula bar. I asked if it had sugar in it and they said no. I purchased this.  I had one bite only of this.  I could taste sugar.  It is now 2.30 am.  I have woken up agin to a most terrible flare up.  OMG it is back again!!!

I cannot believe this.  I can't afford to be ill again when next week I am back at an art show.  I have a very large picture on my table to frame.  The framing takes a day but I need to be well to do it. And now this!!!  My life is really awful.  Why did I purchase that granola bar.  I knew it had sugar on one bite and now its back again!!!

I am afraid to eat anything out!  At home I know to avoid sugar completely!  I am praying it will be a short flare up but I can feel the burning throughout my oesophagus right through to my vagina!  This is a terrible sign!!  And this is only with one bite of the bar!!  Imagine how bad I would be if I had eaten the whole thing!!!  I am wondering if my life is worth living anymore because I cannot bear this disease!  It has killed my quality of life completely.  I am constantly ill with this.  And tomorrow I have to go to hygenist and now do not know if I will be up for it!  I am so depressed!!  

2

Jan

sorry you're having a hard time.

Its more than likely not BACK, just more likely that it hasn't gone away, and while you possibly have a day or an hour when it feels a bit easier, in the first months of your first flare up you most likely will be up and down for a long time.  Maybe not. I hope not.

Dont be discouraged by me telling you this but my initial introduction to the disease only lasted a few weeks and then it went right away. When it came back it set up home and stayed. So far for eight months, and I too have LP and know the pain. 

You have much to cope with and much to learn. It's 

doubtful if one bite of sugar would cause such a reaction, although it's very wise to stay away from sugar in most forms. 

Use your ointment, try comfort methods as you have got from here and tell your doctor if you are depressed! You will get help if you need it. 

Its rather a long road and a lonely one at times.

Your  job sounds fascinating! 

Take care 

3

Lynne

This episode started 2 months ago and only for one day I felt it was easing. The only changes I have made is changing Clob to Momosome and one bite of sugar!  I think i best go back to Clob again.  i get this horrible feeling throughout my whole body and burning.  My vagina started signs of not being so white and red raw and now its gone backwards.  I really feel so ill that I can hardly function.  Do you get so ill with it or am I the only one?

My 'job' is more than a job and is a compulsion.  I have to do it, however hard it is on my body.  i am desperately trying to finish this piece because I am working on a new idea, which shows every country in Europe and shows a  landmark building in each capital, then the size of each population and flag of country.  So I am motivated and want to be well and this disease is killing me I feel!!!

4

The fortunate part of this illness is that it doesn't kill you, but it demands constant care and attention.  That's my experience.  The moment I slack, I get punished, so to speak.  

At all times - watch your intake of sugar, alcohol and perhaps a few other items. Never think that you have been without a flare up for so long and so you can cheat on your diet.  Nop.  It is hard and there are those weak moments; all of us have those weaker moments and therefore have had to learn the hard way.  

With a bit of discipline the reward will be that you can do what you need to do, frame those pieces and have a show.  And thus - you will get your life back.

Also - try hard not to get too stressed over this disease, stress makes matters worse. Eventually this discipline becomes somewhat of a second nature.  Though it takes some time to adjust for sure.  

Hang tough.      

5

Ah sorry Jan, didn't realise was already two months!  OMG and I remember when you first came here too! 

Let me briefly tell you this because it kind of mirrors your experience.....

I  was given  Clob from the dermo when I finally got there, and it burned me. I stopped. She said persevere. I did and got blisters on my already blistered lesions on vulva. I stopped for two weeks while she put me on huge dose of Prednisone to stop the pain so I could start Clob again! It didn't work, I got lesions and blisters and wished I wouldn't wake up. Plus I had very bad side effects from the Prednisone. 

It was my new GP who prescribed my Mometasone (non alcohol) and I have had nothing but improvement. Side by side with a big change in my diet, anti depressants, counselling and help from here! The Prednisone still must be tapered off very very slowly or it can mess your adrenals up, so I am still tapering after four months. They give me tummy ache quite badly which is horrid. Not long to go. My experience with the Clob is not everyone's and it may be that you do need it but just to tell you that not one size fits all with this disease. Not many professionals know much about it. I feel we, the sufferers, must be very VERY proactive. That's what this site is all about.

Some people just can't tolerate Clob and I must have tried it four or five times! Also can't tolerate any ointment as it seems I have an allergy to the base ingredient in ointment so I use cream. 

It took a long time Jan and I felt as hopeless as you do. And I have a husband who is caring and all that.  He couldn't help, nothing helped.

I am behind you all the way, hoping you will soon start to get some relief.

I did feel ill with it, I felt like death warmed up but in retrospect I was deeply depressed and my mind made me an invalid, I was lethargic, I had mouth ulcers and they turned out to be from malnutrition as I stopped eating and lost huge weight in a short time.  It's truly the most traumatic thing that ever happened to me, but NOW I must have a different mind set or sink under it all. And I have a totally different mindset.

Before, I didn't go out, I wouldn't drive my car, I told my kids I would never be able to visit them! I was the worst. Depression is killing! Get those anti depressants into you. 😏

Jan, your project sounds amazing. I would love to see it one day when it's finished. X

 

6

Hanny, you're right, it does become a sort of second nature! 

I call it my "new normal".

two hours a day in the bathroom  becomes barely two minutes now. I think the less you look at 'it' the better! 

7

Hi

Does anyone get a white discharge with this?  I was tested for the normal thrush and bacteria problems and it came back negative. As soon as I fo into 'flare up', the discharge increases like mad!  Also does aynyone get oesophogus burning like I do!  I cant eat. I cant sleep. I cant work!  Will I ever be ok again!!!!  I have lost a lot of wieght and now worried I will get too skinny! When will the pain go away!!!!  

8

It might also be that there is another problem criss crossing.  I would have this throat issue checked out by a doctor, if I were you.  

As for down below - have you considered baking soda baths at all? or baking soda rinses?

 

9

It sounds like you have acid reflux (GERD) stress can cause that, or some foods.  Do you find you sometimes have a sharp digging pain under your ribs? If so, it is likely acid reflux; the problem is that the tablets you are supposed to take to alleviate this can cause more problems long term.  When I have acid reflux I put 1 tsp of organic apple cider vinegar into a glass with at least 8oz of water, and it gets rid of it.  But, maybe you should visit your doctor to see what he says, it might alleviate your stress if you know for certain what is causing the burning in your throat.   The white discharge is interesting, I have had times when I have had that, it resembles milk.   I'm not sure what it is but I feel it is somehow linked to LS, and then it disappears, but it looks exactly like milk.

10

hi

Yes I have the same discharge.  It looks like milk!

I think that the LS is definitely linked to food and also to the gut!

So therefore the burning that I get goes from my aesophogus through to my vagina!

Bad day today unfortunately yet again!

 

11

Apple cider rinses may be of help down below as well.  Brings in the good bacteria.  

12

Yes apple cider is very useful.  I meant to say be careful if you do take apple cider vinegar, make sure you have diluted it well, as it taken too strong it can damage your esophagus, always take a sip before drinking it.

13

Hi

What is the sugar content of Apple Cider?

I am not sure I can have it due to sugar intolerance?

14

I dont know to be honest, but honestly its not going to be that much that it will affect you.

Try not to get too paranoid about sugar, as long as you cut out the main culprits you should be fine.  Stress is not good for LS.

15

Hi

I am a bit obsessed with sugar content as I find, if I only have an apple, or a piece of fruit, I will get a flare up!  So would be terrified to drink the Apple cider.  Why doesn't this illness come with a booklet!!

16

Hi Hanny - you and Morrell have given so much advice and support since I joined the forum and as I am having a bit of a dip at the moment, I just wanted to seek your advice. Much of my 'architecture' has disappeared and the area is very red and bruised looking. My dermatologist is now recommending me seeing a gyny as the area is causing me so much trouble. It looks like I will be going down the dilator/vibrator route and I wondered whether you had any ideas about these? Any advice would be gratefully accepted!

17

Every meal that you eat contains some sugar, sugar is in everything, even when you eat a jacket potato, that carbohydrate turns into sugar in your body.  It is getting the right balance and avoiding the obvious stuff like cakes, pudding, sweets etc.   I forgot to mention yesterday,  that when I see a white milky discharge I immediately suspect thrush trying to get a grip, and I take an over the counter thrush tablet, begins with D and ends in N.  I think  people with LS are susceptible to thrush.

18

Hi

I know that everything you eat turns to sugar, but I try and avoid the obvious things.  I have a feeling the milky discharge could be part of LS as when I have been tested for thrush it always comes back negative.  It doesn't really make sense.  

19

Glad to be of help.  You're asking about dilation...

I purchased a dilation set from amazon.  The set contains various sizes.  Depending on what fits at the start.  I have started with smaller than what was provided in the set.  At the beginning my gyn advised to use a small candle with a condom wrapped around it.  It was a start. At first I had to do this several times a day, just to keep things open after my hospital dilation procedure. 

Dilation is a gradual process, starting with the smallest size;  as things get more comfortable you move up a size and so on. For lubrication I use coconut oil.  I have used the special lubes made for intercourse, but that was not a success.  There is something in those that make things sticky and that's the opposite of what you wish to accomplish.  

It takes patience and diligence both.  

I'm still dilating every other day.  It tried to do every two days, but that doesn't go well yet.

 

 

20

Could also be that you have to help the bacteria a bit.  My most recent experiment with apple cider vinegar rinses made a sure difference.  Once all was well again I went back to baking soda rinses.