When does the fusion/adhensions/change in structure occur?

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.

Hi I agree an excellent post.  I have been thinking exactly the same but being so new to the forum and LS it's bloody confusing!! I am very grateful though to all of you for the excellent information and for sharing personal experiences.  If I hadn't had this site for support I don't know how I would have coped. I have seen 5 specialists mix of Gynecology and Dermatolgy and been given several differnt opinions and guidelines on what to do and when. In 2015 why is consistant information so lacking? 

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 .

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

Your passion is wonderful - while in The Zone how about writing an article for the local paper - or even the national press - local radio and TV - The university  near you?

Tell it as it is and how angry you are You will certainly make an impact

Good Luck Sue

Well, when I was on my "soap box" it didn't occur to me.  But I will think about it.  I would have to sign it, then everyone in my community would know I have it...do you think they would look at me differently ?  

Why not use a pseudonym- JK Rowlings did for her grown up book!

I have chatted to my female friends - and my sons about LS - they dont look at me VERY differently- they think i am different 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.

I am in Scotland.

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.   

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.

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. ??

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. 

This was shown to be ineffective in the 1990's

Apparently it's still being used alternatively with estrogen.

Interesting you say that. Hmm..I'll see if I can get the estrogen.

Anything to get the labia back to normality. I do doubt they can ecpand/ grow back, but worth a shot

Elle, My Vjay looks good, with no cuts, sores, tears, and no white plaques of skin, which seems to be something that most women with Lichen Sclerosus suffer from a lot of the time, and so I am not suffering in the same way as many women are, fortunately for me!   I was thinking why this might be?.....and the main reason might be, that I am Gluten and Dairy free, but I am not sure it is just this, as I take an immunosuppressant drug every day, 2g (for Ulcerative Colitis) and I am wondering if this is in fact stopping the LS from becoming more aggressive, as I  also haven't had a really horrifically serious Oral Lichen Planus flare up either since taking these Meds. 

Immunosuppressant drugs are a class of drugs that suppress or reduce the strength of the body's immune system. They are also called anti-rejection drugs. One of the primary uses of immunosuppressant drugs, is to lower the body's ability to reject a transplanted organ, such as a liver, heart or kidney.  I wish the medical establishment would get their act together, and start doing some research, as I have a feeling that because this disease is something most people would rather not talk about, it could in fact be of epidemic proportions, something that we potentially are not aware off, who knows? And I'm pretty sure if men were losing their private parts, the research would already have started!