I have been aware of new shrinkage and fusion recently which has all happened within a month. Steroid has calmed it down but not unfused me. I had no symptoms (itching or soreness/pain) but it all seemed to happen so fast. My GP told me all looked ok in July. I have seen her today and she still thinks not much has changed and also told me that changes don't happen fast, that LS is insidious and it is just that we don't notice the gradual change. She was happy to refer me to vulval clinic to ease my mind but only because I asked. Appointment won't be for another 6 weeks.
I can't think why I have had this sudden change again when everything seemed reasonable, we were on holiday and I was relaxed. GP asked about the temperature where we were and whether I had been swimming a lot, but I can't see that those things would have brought this on as I swim regularly and heat doesn't seem to affect me.
Has anyone had a similar 'speedy' increase in changes and what have you done about it, if anything?
I have seen fusing occur overnight on myself. It is very scary. I am having a flare up at the moment and have had to go back to my steroid cream to get it under control again. The fusing seems to happen regardless of the itching and flare ups. Again, my gyni said she didnt think my bits looked too bad compared to other people she'd seen, sort of reassuring but not the answer I had hoped for!
Just keep a close eye on your self and treat with steroid cream, apparently it can unfuse but I found a mix of borax mixed with my yes oil based cream applied twice daily help a little with the fusing, it didnt get any worse anyway.
Hi Sarb,
The progression of this dreadful disease is staggering. I too have noticed shrinkage, scarring and fusing no matter what I do. I will go days without looking down there because it has become so disappointing. I can pretty much keep the itching at bay, but that is about it. I personally don't see any value in going to a specialist because all of us here on this forum know more than they do. If things get so bad that I need to be unfused, I'll see one. Good luck Sarb!
Everything appeared to be under control until one of my children (adopted,) (I'm 80 she is 27,) has some severe mental problems that became intensive. This changed condition changed so fast that I, at this point, am unable to insert my estrogen cream dispenser. The Lichen Sclerosis and Planus? (mouth) have become a real problem. My mouth has sores and I have lost two teeth, I was always proud of having my own teeth. It's nice to have anything original at 80. Hopefully this will reverse or I may have to have surgery.
I’ve also had fusion over night and is going a a rapid rate , I can control the itching and use steroid cream only when I flare up when I’m on my good days I just use caster oils and lavender oil mix after every toilet visit
I was diagnosed in June, no changes until 6 weeks, then between 6 weeks and 11 weeks almost entire right labia gone. Left is fine- normal size. I used Clob for 2weeks, 2 x a day and no more changes, but I can’t bring back what is missing. Clitoris has also “ retracted” and is harder to feel, less sensitivity, used clob on that too. Seeing vulvular specialist Oct 22 to discuss.
In remission now, no symptoms, following my diet, taking my supplements and trying to get back to living my life.
I have been greatly helped by my rinsing with borax or baking soda. (three pinches in a Perin bottle after bathroom visit) And also by sitting in baking soda or borax baths (1/3 cup for baking soda or 1/6 cup for borax in a full bath)
Perhaps it is worth a try. What did it do: every so gradually it stopped the fusing and actually let go/melted away. I back to normal.
Pat, I have LS and LP. For both I rinse with borax as described in my previous message. Didn't want to loose my teeth either. So I started to no longer use toothpaste. Instead a brush with a tiny bit of baking soda on my brush and rinse after flossing with water in which borax dissolved. So far so good. I hope this is of help to you.
Did you find that Borax was better than baking soda? How long did you sit in the solution?
The baking soda was my first experience with LS going in reverse. The top part around the clit was hard to beat and the time when I started to use borax. Now all is gone back to normal. Took a while for this to happen though. It is by no means a 'quick fix'.
I still do borax baths every other day (while at home) and in that way all stays well. I sit in it till the water cools a bit.
Thanks Hanny. Hard for me wrap my head around sitting in detergent and the box is so huge. So it sounds like the Borax had better results for you. I'm glad you are doing well.
Hi Pat, I have Oral LP too, just diagnosed by dentist. I was told it doesn't affect teeth, but I get a lot of oversensitivity in them
Pay I also have LS and OLP, the thing that has really helped is Vitamin D3 in the morning , then I take a Turmeric twice a day , you need to get the one combined with black pepper as it absorbs better , it’s a max dosage of 1600 mg per day . I find it takes the inflammation straight down . When I get the rough patches I also drink camomile tea which my dentist recommended and that’s is brilliant xxxx
Your post mentioned keeping itching at bay. I have almost continual irritation and semi burning. The itching is under control, but I am freaked out because almost the whole right side of the labia minor is gone. Gone.
And I'm confused about what to do. Did the LS do this, or did the steriod cream. I didn't use it for awhile and was using aloe vera. If you have any insight, I would sure appreciate it.
Thank you
Susan
I noticed a change very quickly--I think drs want to downplay this but, to us, it's pretty devastating.
Oh Susan I was wondering how you’re doing. Sorry to hear you’re still suffering. Same here. Cut sugar etc and started borax sitz baths but I am not FEELING better even tho I truly think the borax soaking helps, I can’t do it often as I’m so sensitive to everything it seems.
I have other issues right now that arexalso miserable...
anyway just st wanted to tell you I was thinking of you! Be well 💜
Definitely better for me, I use both...
Hi sarb- so sorry you have this happening. Yes I’ve experienced rapid fusing, too. The only thing I’ve found that truly stops it in its tracks is borax soaks like Hanny talked about. And for me small amount of steroid cream as well. I use a very small amount of borax in a sitz bath (1/2 teaspoon) with a little baking soda too.
I ended up with an unusual situation personally so I cut back some temporarily- but most women say soaking once or twice a day in it is helping them stop symptoms. It can take some time and can get worse before better so hang in there!
To all of you: there is a Facebook page/group Healing With Borax that has information and support that I’ve found helpful and hopeful!!!
💜💜💜
The disease took away your architecture, not the steroid cream. The cream will thin thickened patches of skin, and keep it away from healthy skin. I too hv lost most of my right labia, my left is fine. I hv no pain, no itching, but the labia will not come back. Some ladies hv used Estrogen cream to re- plump the labia, but I am not menopausal, I still get my period every 28 days.
My Dr said it was the LS that caused it, and the steroid cream is the only thing tgat can halt it.
I believe it is a weak link in our immune system and I am determined to find where my weak link is.
Hi Hanny
This is encouraging and I will try the borax baths. I do swab with borax solution every morning as I find it soothing. thank you