Lichen Sclerosus and Lichen Planus - OMG ITS BACK

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

 

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! 

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!

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.

 

 

I received a set of four from Amazon last week, and have started to use them, but only about twice a week so far.   I started on number three hoping to get to number four because that looks to be the size of my husband.  I do wonder whether I even want to do this, sometimes I think it is just easier not to worry about sex and enjoy ourselves in other ways, especially as he says he's not bothered...but I don't really believe that to be true. What worried me was the fact that any pressure on the band of skin at the entrance to my Vjay hurts, (six o'clock position) and so even if I make sure I can have sex through dilating, I think its always going to hurt me in that place.   For example, when I used it I thought I would read my book for a while, thinking that might be a good idea, leave it in a while, but the weight of it (it has a handle to hold onto) pressed down right onto the band of  skin ('six oclock position)' and it hurt like hell.  

I thought to be able to read a book as well, not such luck.  It needs all your attention or you can easily hurt yourself.  If it hurts while you're paying attention, take it out and gently try again.  Sometimes a small fold in the skin can cause discomfort as well. In general - it should not hurt.  I have had times that I went back to a smaller size.  Gentle approach has had the best result.  

I'm not sure that it is important to mention - I also have a hormone replacement, estrogen and progesterone combo.  The HRT is locally made and the estrogen is used in very tiny amounts in the vagina.(The progesterone is taken orally.)  It seems that it helps to make the skin more stretcheable. It improved my general well being. 

In case you need a reason why you dilate:

It was just so that I kept things open and was able to empty my bladder in a normal way.  The intercourse part was an unexpected bonus, still done with care and gentleness.

Make sure you lubricate well.  For me coconut oil worked the best.   

Hi Hanny

I have been on the oestrogen cream form last year given by my gynaecologist, she said rub it along and under the tight band of skin in tiny amounts to reduce the tightness. It's irony really, as I don't have sex now, but it worked all right and that tight band is much looser. I also use it to protect my urethra from urine burn as I have a slight prolapse and that has helped hugely. I get no burn around there. The doses are tiny, I apply with a cotton bud and make sure the cream goes right inside the tight band.

Thanks for that Hanny - much appreciated. It was also supposed to have been sent to Morrell and I thought I was private messaging you both! Anyway, you have certainly given much info + advice which are much appreciated. I am freaking out over this as I was in great pain when having smears a few years ago which is when LS was initially diagnosed. I am not in a sexual relationship and so I feel quite alone with it all and trying to understand where it is all going - literally! I also feel that I am not peeing properly as I seem to be spraying rather than a stream and you touched upon this when you said about emptying the bladder in the normal way. I wish I understood this wretched disease as it seems to have so many implications but thanks again for the invaluable support you give to so many.

You're most welcome.  

Yes, emptying the bladder is as you said.  That might improve as the fusing makes way.  My fusing gradually melted away when I started with the baking soda rinses after every bathroom visit.  Not too much, just a few pinches in a Perin bottle.  This treatment supported the dilation procedure and gradually, very gradually, bit by bit, as the fusing lets go, your spraying will turn into a normal stream again.  Keeping the layers separated with the coconut oil.  

As you make these small improvements ever so gradually you will learn to make the observations that tell you what to do.  As long as you don't force it. Just stretching very gently.    

And don't hesitate to ask again.  It's with the sharing that all of us benefit.

Thanks for mentioning that.  I didn't think of the urethra and that it could help there as well. 

Thanks, I think I will look at getting some estrogen cream,  it sounds like Lynne has had some success with it too..  

I agree that dilating is important even if your not having sex, mainly because LS is unpredictable and therefore you always need to keep on top of it.

 

As long as you use a tiny, tiny amount of the estrogen cream.  The pharmacy pressed that on me, saying, only a drop.  

okay, thanks a lot.