We are raw, irritated, red, have tears, hurt, sore, itch, and have white patches. We also have fusion and disappearance of some of our parts. Just by looking you can see it all happening except the fusing and disappearing parts. It seems adhering occurs when you don't know..it just appears one day. Is it occuring when we itch or when we are raw and irritated? Do the white patches causes the adhering and covering over our parts? Does the fusing happen at the white patches or can it happen anywhere else on the vulva where we don't have reddness, white patches or itching ? Then do we use it all over the vulva when we are free of flare-ups and using steroid once week? When we are free of a flare-up where to we use the cream? Do we use it where we had the iritation ? Do we use it where the scars are and the fusing is even though we are flare free? I read we use the steroid to prevent further scarring and fusion, but I'm still not sure if the fusion is the result of the other symtoms and when we do maintence with the steroid where do we put it? Hope this makes sense.
An excellent post Judy! I have watched the Dr Goldstein webinar, listened to my gyny/dermatologist, read all the contributors on here who can express themselves far better than me and still ask these same questions! I cannot give any answers myself but just wish there was an oracle out there somewhere! Thank you for putting into words how I have been feeling for a while.
Well Judy I think you reflect the confusion we all feel, well me anyway.
does anyone know how things progress?
I stumble along, when things feel comfortable hope for the best, when I itch soothe with emu/coconut oil, when sore use dermovate, keep checking and find a bit more missing every now and again.
What a strange disease, it would be great to totally understand what is happening and know how to cope.
Absolutely agree with your post! I have a appointment with a vulva specialist on 7th September! I'm hoping to get some answers?
What I'm noticing for me is that I am red, raw and burning prior to changes in appearance. Coindicentally I've been in the raw state all week and this morning the aggravation was dramatically reduced and things look different.
Elle, I hope you don't mind me asking. Do you mean you now have changes on the vulva? How will you treat it ? Will you put steroid on what use to be raw and burning and on the changed parts ? Were you using the steroid on the raw parts before and during the flare-up? I read how ladies work so hard to keep their LS from flaring and the structural changes happen anyway.
Good, I have an app't on the 21st of Sept. and I am making my notes. Are you in the states? We will have to compare what each says.
It makes me angry that research community does not care! It IS a strange disease and wouldn't you think somebody would love to research it. What makes me more angry than anything is gyno. don't seem to know anything about it ,and derm don't either. I'm not referring to the specialists. My gyn is a woman for pete's sake! She did not tell me how to use the clob or what the side effects could be. She didn't tell me what to expect from the disease, she didn't tell me to use a moisturizer. She didn't tell me that I had changed down there. I came home looked, saw it. I was shocked! Another thing that makes me angry... now that I've got started...is I am tired of hearing about "the war on women". Why the heck don't they start looking at LS...speak up for us ! They talk about women losing their breasts, and I hate that women have to go throught that. But we are losing our whole area down there and nobody does anything. I'm sorry if I am over the top, But the longer I deal with this, the angrier I am becoming...not because I have it but because the most of the medical and science community don't seem to care. I'm sorry Pollyanne .
It seems like a curse on us ! And, I feel the same...isn't there anybody out there that will help us ? I feel so bad for the women here who have delt with this for 15-20 yrs. They have raised their children, worked, went on with their lives. Had failed relationships. They are amazing . I am retired and my children are raised. I've had years of great sex. I am very lucky that it hit me at this period of my life. I think of you younger women everday as I try to handle this. But you all are having to handle not just LS but jobs, home, children. Women deserve more help in trying to find out more about this disease.
Yes, things look different. There has been some fusing and atrophy. Overnight. Not a lot, but I don't have a lot to lose so it's easy to see the changes. As well, I've usually got that mirror out daily so I know myself well.
During the flare I am applying Clob twice daily after soaking in the tub with baking soda, and I will keep doing that until things calm down. I apply it to all LS areas once daily and only the burning spot, and anything that doesn't look 'normal' for the second application.
I've read many places that estrogen cream is the way to go to stop the fusing and bring back normality.
My gp is sending me to a sexual health clinic now. I think to get a second opinion 're the cream. I want to try it though. Don't have any other symptoms at the moment except disappearing bits, - and that's enough too! I'm not menopausal yet, so a little worried .
I've tried the phyto estrogen cream, still using it, but so far no change.
Fusions/adhesions - this is how I handle these but it may not be for all of you! As soon as I get that nasty "caught my skin in a zip" feeling, I whip out my mirror and, if their is a piece of labia stuck to something it shouldn't be .............. I take a deep breath and pull it apart. It hurts! It really hurts but I massage the area, apply ointment and within a few hours I'm back to (ab)normal with no bleeding, pain or itch. I think you have to act quickly or it's too late. Since I have adopted this procedure I haven't lost any more structure.
I have also massaged a lot of emu oil and tried to unstick, it does seem to free labia a bit. Does anyone else get a what I can only describe as a creeping feeling? Almost like something crawling on your skin? This is when I think I fuse a bit.
Don't be sorry, we all feel like this at some time. You do get to accept that you have this condition and tell yourself there are a lot worse things but sometimes it just gets to you and you get angry or depressed about it. I am lucky that my dermatologist, female, is a vulval specialist and was very helpful. Gynaecologist a few months earlier said he could see nothing wrong.
I don't think I have it as bad as some of you but I am losing labia and feel very " open" and wonder if it will make me more prone to infection
I get a tingling feeling. It feels very much like the prodrome stage of getting a cold sore.
Yes I have heard this too about the creams and I have an appointment later in the week to request a prescription precisely for this reason.
Testosteron cream has also been mentioned. ??
I don't know if it is the same, but I get a similar feeling at night. Sometimes I wait up and put my undies folded between my legs to stop the feeling.
My understanding is that testosterone is an outdated way to treat LS. I've only heard of success with estrogen for helping with skin texture and possibly preventing fusing.