Lichen sclerosis flare up

Hi there

Thanks for feed back very grateful. My LS has been very quiet for years another than the occasional itch which I've nipped in the bud with dermovate. I knew my vagina was narrowing and did try dilation but it was too painful so sex is a no no don't think I could get a pencil up there now! I have been a bit anxious of late with a few viruses this winter which is rare for me. Didn't realise my clitoris had completely fused it hadn't last week, not sure what I can do about that I've got estrogen cream maybe if I apply that. I've no splits or cracks just feels sore, scratchy, dry and irritated particularly near uretha. I've read it can travel up there too God knows how I tackle that? Dermovate feels terrible when I apply it at the moment so not using it. Sorry for going in just not sure what can help or who. As steroid cream seems to be only medical suggestion. I'll try coconut oil and baking soda baths (how much)? Thanks again

Adding to dilation - I started, don't laugh, with a crayon wrapped in a condom.  Gradually  I could 'promote' to a bit bigger size, a candle, then finally the smallest of the dilation set fitted.  It's a gradual process that can not be forced.  At first I did it six times a day, after my hospital dilation procedure, just to be able to keep things open.  Later three times a day, now once every other day with the biggest size of the dilation set.  And gentle intercourse is possible again.  

Thing is, I learned that you don't just dilate to be able to have sex, you also dilate so your urethra won't be blocked altogether with further fusing of the outer lips. A person has to be able to pee.  

For the baking soda bath I use less than one third of a cup in the water.  For the rinses after every bathroom visit I use a few pinches in a Perin bottle. Deb dry and then I apply some coconut oil.  This routine, every other day a baking soda bath, has kept LS reasonably at bay.  

Hope this helps.  And indeed, the medical world has only dermovate/clobetasol to offer.  Very few suggestions next to that.

Hi - I am very interested in knowing if anyone has been using testosterone or estrogen or even progesterone topically to treat this. The research indicates that testosterone is no longer used in the treatment of LS because of the problems it caused with acne, the growth of hair and the exaggerated growth of the clitoris. But with this huge concern of the clitoris being absorbed, as mine is becoming - to my horror - I am desperate to know if people have experimented successfully with these hormones and found real benefit from them. Your input would be most gratefully received. 

Hi there this testosterone or estrogen theory is a new one on me and has never been mentioned by my consultant, but I'm seeing her on Monday so will ask her. I have some ovestin cream and find a little of this helps with the dryness issue (maybe only an issue if you're post menopause like me). I don't fancy using the testosterone to defuse. I know surgery can be an option but not sure this would be a permanent solution as I'm sure the problem would likely reoccur. I had a procedure done a few years ago when living in Cyprus this gynaecologist did something with a scalpel down there, stuffed gauze up and told me to leave it for a few days!!!! I should add I had local anaesthetic, but it was a bit alarming to have this done in his consulting room. It worked for a time but gradually the problem came back. I hate the thought that my clitoris has dissapeared and don't know if there is anything that will reverse the fusing. I have a slight pain in this area which I couldn't work out but now assume is maybe due to the pressure of the fusing. Compared to some on here I have got off lightly but probably because I don't even consider penetrative sex anymore, it would be a car crash!  I admire all who do their best to retain a sex life, I feel your pain. 

Many thanks for your reply and I will be waiting to hear what your consultant says. The thing that freaks me out completely is how fast this disease can move, almost before my eyes, although I am doing everything I know at this point to stop its progress, I am now pain and itch free but the lunar landscape of my vulva keeps growing. I really appreciate your note and your understanding.

Hi, thanks so much for this post. It would be very helpful to know why this testosterone cream was (is) helpful to you. If you would feel comfortable sharing a few details about the benefits it would be greatly appreciated. I know testosterone was used as a drug of choice until it was abandonned because of its adrogenizing effects, but I'm just beginning my research here. Thanks in advance.

I use estrogen topically, vagina, and progesterone orally.  I think it is part of the solution, but not necessarily the whole one.  

My best result came from baking soda baths and rinses, where the fusing gradually let go. However, the clitoris area was the most difficult one.   

Thank you so much for this. I will start with the baking soda today. 

You're welcome Mysticat.  Take less than one third of a cup in the bath.  That's all.  

Hi there I think it's the same thing just the technical name. I've ordered some on Amazon which is pure grade for everything. Fingers crossed but not optimistic. I've found the coconut oil is quite soothing though and doesn't make things worse. My dr always suggests these emulsifying creams to wash in but it's like smearing lard on and you don't feel clean. I use sanex 0% sensitive which is fine and there's a new intimate wash by sanex which is priced but I've bought some to try. 

Hi - I believe that baking soda and bicarb are the same. Baking powder is another matter Thanks Joyce for referring us to Amazon for this. 

Not baking powder.  Bicarbonate soda it is,

hope it doesn't end up like a Victoria Sandwich 😉

Ok - I have for the first time today experimented with rinsing myself with a solution of bicarb and water after urinating and found it very soothing. This is good. Now if someone could help me figure out how to hang onto my clitoris that would be even better. All suggestions gratefully accepted. We really must write a book about this forum, no one would believe it! 

 

A person needs a bit of patience - the effect of baking soda takes its time. That and the combo of diet and such.  In the end you will recover what you lost.  Perhaps not top notch, but very liveable.  Hang in and be patient.

thank you for your kind encouragement, it has been a very hard day of facing this disfiguring illness and my new reality.

I've had this condition for more than 20 years and most of the time it's not caused me too many problems

It obviously affects people differently and the effects seem to creep up on you silently sometimes. It's a shame that it is such an unknown problem as I'm absolutely sure there are many many women out there who are suffering in silence. However there is some excellent advice to be had on here so let's keep sharing. 

Thanks so much for this. I have found this forum to be so helpful and supportive and have learned far more here than from the dermatologist who diagnosed me and gave me a paper to to take home and read on LS. You lovely women are a tremendous comfort to me just now. 

It is not necessarily easy.  It takes courage and determination.  It takes time also to get used to 'a new reality'.  But eventually you will be able to manage and fit in a certain routine in your life.  Hang in girl.  

Bless you Hanny. The caring on this forum is priceless.