Symptomless LS but loss of parts

I have read through this discussion a couple of times and think this fits me too.  I dont have symptoms either; no itching, no white plaques.  Just the disappearing and fusing of parts.  My inner labia is very very small and my clitoris is very small.

I've only been diagnosed 5 weeks ago. And had no real symptoms except a little burning on one small part of my labia.

I'm using the Clob 5% now 2x  day but every day I seem to be smaller.

My question is, are we disappearing because of the Clob or disappearing because of the LS.

I've listened to Goldsteins video but dont recall him saying why we are disappearing.  I guess that's the scarring or fusing.  I dont really see a lot of scaring.  

I'm not sure what to expect next?  

Can other women say, what will happen next?  What happens when everything disappears?

Hi ChrissyC, well I went back to my doctor who has now put me on diprosone. She advised that this was to get to the deeper layers of skin as the LS destroys the lower segments( I've forgotten the term she used)  of the skin including that of the clitorus if that where the problem is. 

I have to apply to whole area daily for 3 weeks then reduce. There is no guarantees. I don't know where else to turn but I don't think I have long as it is shrinking fast. I don't have any other symptoms except shrinking bits. 

I have sent some emails to research medical centres cause I don't have time to waste going to different doctors if they haven't had success in treatment. 

Hi Chrissy.  About three days ago when I was putting moisterizer on I felt  just above my clitoris and all around the top, there is a deep indention.  While standing up and placing my finger between the labia it just drops down.  My clitoris is fused and scared but I hadn't noticed that before.  While laying it isn't so noticable.  Does that make sense ?  I am afraid that is happening to me.

Hi ChrissyC. Wellim into my 3rd week of using the diprosone  daily , as well as the Ovestin 2/7 but seem to be getting smaller faster.  I haven't followed through with referral to other gyno's. What is it about putting our health at the forefront? Rather I have been with work,home and family issues so haven't found the energy to focus on me. I know it is urgent. Has anyone else actually had the clitoris otally disappear?? Maybe I'm denying that this is actually happening. 

How can part of the body just disappear if it still has a blood supply.

Chrissy, one side of the clitoris has adhesions but doesn't itch, The scars look like cauliflower (only way I know to describe it).  Then around the top of that side, it is sinking in.  Does that sound like the way it disappears?  It is smaller.  I am not using clob because I will be seeing specialist in 4 weeks and I am afraid the clob will interfer with the tests.  But I am afraid that 4 weeks may b too long too wait. Have you tried other creams?  Maybe another would work better.

Hi ChrissyC.  I had a bladdar sling surgery for urine leakage about 5 years ago.  The urologist/surgeoun told me I had the smallest urethra she had ever seen.  She stretced it to do a cystoscopy before the surgery with no anesthesia. (very painful)  I didn't have any symptoms until a couple years after and it became itching of the labia minor and at times the labia major.  At times my rectom would be itchy.  Since it was sporatic I chalked it up to yeast infection.  A year ago I started having UTI's which would clear up with antibiotics and then come right back again.  I bought some black seed oil capsules and started using them to clear up the UTI's because I was itching more often and thought is was due to the yeast from the antibiotics.  It helped with the UTI's and the time between infections was less frequent but I went to another uroligist since I had moved and he had me come for a procedure to check my bladder to see if it was inflamed.  He had to stretch my urethra again to get the camera in.  He never mentioned to me that anything was wrong with my genitals so I assume they were normal at that time.  That was 3 months ago.  I never had any symptoms and all seemed well down there until about two weeks ago.  I started having burning sensation in my vagina area.  I discovered to my horror that my labia minor were completely gone.  I went into a panic thinking the Doctor had cut them off.  I called the surgical center where the procedure was dont and they assured me thaty did not do that there for any reason. They told me to see my doctor asap because I had a serious problem that needed to be taken care of quickly.  I then got online to research "my labia minor has disappeared" and came across LS and knew that's what I've had for all these years. It had slowly closed my urethra and had taken my inner labia, both sides completely that quick. My doctors told me the soonest they could see me was over a week later.  After more searching online and seeing how fast people were losing their privates I called to let them know how serious this was and that I would have to come in sooner.  I still have my hood and clitoris but I doubt there will be much for them to look at by the time I get seen. I haven't yet been seen but I know this is what I have and I've seen on many sites that can be hereditary.  I have talked to my daughters and told them to check themselves just as a precaustion. I'm much calmer now and have resolved to myself that it's nothing I can change and probably will eventually not have much of anything down there except for the 3 holes.  I'm still sad about it but not panicky.  It's so sad to feel so deformed....  And sadder yet that more research isn't being done.  I was thinking if my doctor doesn't know enough about this after the exam I would see a naturlist doctor even if I have to pay out of pocket.  I just wish I had know this information before my stuff disappeared.  But none of my doctors mentioned LS to me although I was diagnosed with auto immune disorder.  I have ulcerative colitis but haven't had any flare ups lately.  Must be because my immune system diecided to attack my woman parts instead.  I'm taking the black seed oil and plenty of vitamin D to build up my immune system but will be trying some other advice I've found on various sites. I'm so thankful for sites where I can talk about this with someone. Seems no one wants to converse about my stuff just vanishing into thin air.  

Hi , just found this forum and am relieved to know I am not alone in asymptomatic LS with loss of architecture! I was diagnosed nearly 4 years ago, on finding a small white patch which responded to Advantin cream. I had virtually no labia minora at that stage, to be honest never did have much anyway. The doctor gave me very poor advice, as I later found out, to use the cream sparingly only where needed and after the white patch disappeared to only use it when I needed it. As I had no symptoms I didn't use it. I had regular checkups and she was happy with progress although I was by this time getting fusion of the clitoral area. I was using some Ovestin cream to help with dryness and to help with my Pap smear as the last one was very painful...probably had fusion starting there too . Saw a different doctor who was pretty shocked by my loss of architecture and referred me to a gynae oncologist for a checkup. He was great and put me on a proper LS regime using Advantin ointment. He also suggested vitamin E pessaries which are brilliant. I use Ovestin cream in the hope it might help the fusion, it definitely helps the elasticity of the skin.

Has anyone had any success unfusing? I am grateful that I don't have the other symptoms of LS but find the fusion very distressing, it seems to be slowly progressing. Sex is out of the question , not an issue but I'd like to think it would be possible. 

I realise this us an old thread but hope everyone is doing as OK as possible.

 

Hello ChrissyC,

I have the missing parts to. They very slowly went away, but the first year no symptoms the Dr told me I had this disease. The 2nd Year and tiny bit more symptoms now going on 21/2 years I do have itching , white skin, parts gone and it's working towards my rectum. Yes I feel like a freak and so very alone. It's hard to discuss this with anyone I'm embarrassed. My fiancé is wondering why I don't want sex and if I do he can't see me or touch me. It's not fair to him. Maybe I shouldn't have a partner. I want my life back but I know my body will never come back. Sorry not very uplifting. But to answer your question yes I feel alone.😔

Hi! I have the same symptom i think. My labia minora healed together at first but now they just getting smaller and smaller. From the back and to the front, the are disappearing. Also the length is getting shorter. Now they are almost gone. Also the outer lips is getting smaller. Now i have problem to sit without my trousers just rub against the inside all the tim, (nothing there to protect the area anymore)

If u mind im asking... Are u still enjoy having sex? Was wondering if it feels very strange when they are totally gone?

(I have an extremly oversensitivity sence birth so i cant enjoy nothing right now, bcz of this, but was just wondering how it is for a person with normal tactil feeling.)

I whould be very grateful for any kind of answer.

Best regars! //PandaT