Scared to discover labia gone will fusing stop me peeing?

I see my gp every year for medicine reviews last saw her in January she asked if every thing was ok with the LS which it was I have no itching or soreness no problems.but I never look down there so have no idea when things changed one side has more than the other but basically one flat circle on one side and a fleshy oval on the other. I contacted the surgery last week in a state as scared spoke the nurse who asked me to describe it she said sounds ok nothing worrying her and to keep the appointment I had made I see gp on Friday morning.I am so scared I can't eat or focus on anything ..

So what is your current treatment?

Clob and diprobase aqueous cream to wash with ,no scented products .I am symptom free apart from noticing down stairs has changed.

I would suggest you see someone. Sorry for your stress. Everything is fixable. Stay pro-active!

I see my Dr on Friday but have no one to talk to after reading the artical about the lady who's terminal from LS I have my self in a real state.I don't want to be pulled into hospital checks I have recently had a health scare and been diagnosed as coeliac (also autoimmune) and have to have my bloods checked regularly.Not sure I can take much more

Hi alison, I am not sure why that lady posted the article on the women that has terminal cancer... it is not helpful.  Yes, of course, we want awareness, but posting an article like that only scares people, especially people like yourself that are worried.  Put that out of your mind. Many people are diagnosed with cancer every day and sometimes people that have LS get cancer, but it is very very rare and in both cases where I have read about it it is when the lady did not receive the right care for many many years.

With regard to your current worries.  What I think might have happened is that the doctor you visited knew you had LS and so when she examined you recently she probably thought you were already aware of the loss of your architecture.  Many of us though, dont look down there as often as we probably should.  What you are experiencing is unfortunately normal for Lichen Sclerosus, many women have lost their labia minora and it is thought to happen more rapidly after menopause.  

With regard to your clitoris, it is probably still functioning but not as clearly visible.  You might have to test it to see if you can feel any sensation there.  Even though it is distressing, you can still function as a normal person, as some women are born without their labia minora and they do fine.  The only time you need to worry is if the opening of your vagina begins to get really small which is why it is important to use a dilator at least a couple of times a week to keep that opening open and to visit your doctor regularly..which is what you have been doing.

You have no white patches and no itching, which is great!! ...it means everything is good.

 

Thank you so much for your reassuring reply ,if I had my way I wouldn't go to the Drs but my partner ,poor guy I have been getting him to check things lol thinks I need to to put my mind at rest .I am not going to take her referral to hospital as I would prefer to see someone who I see who knows what I look like down there and can check me as needed.

I just have no one I can talk to I moved in with my partner and know no one here and friends move on from where I used to live and my mum isn't the approachable type.

So thank you

I am so sorry and completely understand.  I also have auto immune issues.  I have Rheumatoid arthritis and fibromyalgia . When I was diagnosed with this I was really p****d off... LOL...kind of bitter since intimacy with my husband is one of the few thing I enjoyed without pain.  So... lets just try to stay positive. I dont know anything about a woman being terminal from LS.. The only thing I can think is that somehow her condition became so bad that she developed some kind of cancer? 

When you are auto immune compromised, you will find that you will need to clean up your digestive system.  It has a lot to do with those things.  I knew I had a lot of problems with Candida and yeast infections.  But sometimes the yeast will grow in your body with very little or no symptoms. 

I currently take a supplement for Candiadasis.  Watch out for sugar consumption as this triggers a lot of auto immune reactions.  

I will keep you in my prayers.  Let us know how things go..

You are welcome to talk to me anytime.  I understand how hard it is to tell anyone about this.  I just have in my mind that they would think I am some freak lol.  I have been through alot with this diagnosis.  I also have fibromyalgia and was just now diagnosed with an extremely thickened uterine lining with cystic mass.  I have a D&C scheduled for September.  I worry about taking Premarin cream since 2010 for my Lichens.  I've read where you should not be on an estrogen cream for longer than 3 months and mine has been 8 years due to the increase of uterine cancer. 

There is now a topical cream here in the states that's shows no trace in blood. It's a topical estrogen.

This is a wonderful reply. Thank you Guppy.

Correct. It's a gel and plant based. I have it. Estrogel. It is my final course of treatment. I am clear and super sexually active with my husband and comfortable. My area looks like it did before LS. I didn't he 6 mo course of treatment with the clobe. (Weaned off) once clear and unfused I started the estrogel. Picture perfect. I received biopsy and treatment on first notice. Did not sit and wait. Started with the white peas size spot on my hood. And felt like a cut. Did not spread once I started the clobe and applied to the affected area only. Olive oil for moisture everywhere else.

Glad things are improved for you ,have you been under hospital care or Gp?

I went to gyne for years saying something is wrong and he said oh it's just you getting older.  I WAS IN MY 30's when he said that.  I changed doctor's in 2010 and as soon as my new dr. saw me, she said honey, you have lichens sclerosis.  I went through so much trying to get back to normal!!!  I believe my dr. used some unconventional ways, but it did work.  I was pretty much back to normal, except for the very top and the very bottom of the labia.  I had to do most of the work myself, along with clobetosol and premarin cream.  Then had surgery for the very top and bottom.  The urination problem came later on when I had a bad flare.  I am good now though, but I am faithful with my creams.  Each one applied 2 X per week.