So depressed :-(

Women's health
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So I’m sat  here, 31 years old, trying not to scratch myself to bits, and thinking is this my life now? My sex life has dropped dramatically, cancelled my wedding because of this horrible disease and just thinking this wasn’t what i thought I’d be doing at this age! I’m doing everything I can to help myself but I can’t get out of this black mood. I can’t even tell my friends or family about this because I don’t know what uneducated people will

Think?! It feels like a dirty secret :-( I’ve lost 3/4 of my labia in 15 months. Once it’s gone will this awful itching stop? Xxx

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Hiya

Have you tried changing your diet? I cut out sugar, dairy and gluten and my LS went into remission (and had stayed there thank god) x

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Hi george I have also got this I use the cream the doctor gave me it works very well and I have used it for 2 years now no itching.to be true full the sex life does inter fear with this complaint but don't let it put you off everyone I know they are very understanding so don't be afraid to tell them it will help you in the long run.

 

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Hello George,

I feel your despair and the almost impossible ability to find a remedy from this peculiar condition and in all places!!!. 

I'm new to this site and am very surprised at how many women have this and I'm ever so grateful to share this with those who have signed up.  This site is chock full of information and relief on several levels.

I am so sorry to hear you cancelled your wedding.  I hope your fiance wasn't freaked out but rather understanding and willing to work with you on this. I look at this way to get me through the day—we ALL have something to deal with and this is one of them that just requires a ltitle more patience and understanding from partners.  

I scratched and bleed for two years before seeing a doctor to get diagnosed and had a biopsy. I got the itching under control with Clobestol (not to be used all the time) but only for extreme itching, then I switched to castor oil.  THere are other lotions, creams and oils that might work for you. I'm  72 and have been dealing with this for 10 years, I"m single, but trying to change my attitude to start dating again.  

We are all actually being our own detective and if you read through some of the posts you will find a way to cope with this.  Relief is personal and everyone does something that works for them.  There is not one treatment that works for everyone.

Please stay in touch here.  People seem to be pretty accessible to answer questions. You are not alone.

I'm sending  you hugs and hope you can feel hopeful in finding this site.  I already feel better that I'm not alone.

xo

 

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I'm right there with you! I'm 37. I'm already married but feel guilty my husband may have a lifetime of no sex. Plus, I want sex!

I diagnosed myself using Google. I've never had white patches only "recurrent yeast" and UTI's. Plus now I've got bacterial vaginosis. My symptoms started about 24 years old. My dr. Led me to believe that some people were just prone to yeast infections. Eventually I got tired of going and paying all that money so I just begin self treating with Monistat. I accepted that I was doomed to have what I thought were yeast infections every single month for YEARS!

I'm mad at myself for trusting the doctor, but I also realize without the white patches It's probably hard to diagnose. One of my labia minora is totally missing, my clitoral hood is damaged and is probably going to be gone soon, and my other labia minora is really small.

I'm waiting to see a specialist because my biopsy did not come back positive for LS but did come back positive for a bunch of long skin words. I know that I have LS but now I don't even have any medicine to treat it until I get to the specialist! I feel hopeless and at one time I felt so depressed I didn't even want to live anymore!

I wish I would have got diagnosed sooner and maybe I wouldn't have lost all my parts. I never knew such a crazy conditions could actually exist!

What does your fiance say about calling off the wedding? A culture is so obsessed with sex and yes I'd love to have some, but at the end of the day it really is not the most important thing. Sometimes spouse goes through things like cancer and strokes and they can no longer have sex either. If you're calling off your wedding are you planning with being with no one for the rest of your life?

Don't get me wrong my husband's best guy ever and I know that he is really faithful and so I feel like he's been so jipped for having me as a wife. Not only can he not have sex but he's also getting a depressed sad me.

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So sorry to hear this, but from experience I know emotions, stress, mind set are can make condition worse.  All my problems started from extreme stress.  I just try to relax by reading, computer games, hobbies etc,  Very restrictive diet, no sugar, gluten and reduced dairy.  Use Clobetasol twice a day, I getting better after a huge flare up a couple of weeks ago.  Good luck 

 

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You have been to gp haven’t that’s a start have the tests then using the cream etc. I understand how you feel I do also get depressed I’m using E 1000 which is helping at the moment. 

Please tell friends and family they won’t judge you, how your feeling keeping it all inside makes it worse. It’s like an anti ammune

Problem I was going mad for years before I found this site. 

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Dear George,

Oh Gosh, so sorry you felt you couldn't confide in your fiance. This LS has finally been proven to be an autoimmune disease like over 100 others very well known.  At this point it would really help your depression I would think to share with your family at least that you have been battling this autoimmune skin disease and you'd like some help identifying how many other autoimmune diseases there are in your family.  anything to bring them into a compassionate response. 

You might find it helpful to read the list of 100 from the American Autoimmune Related Diseases Association (AARDA).  There are cross connections between many. at least I know that thyroid issues and LS are very much connected.

You might want to ask your doctor to test you for the TPO antibodies for thyroid... and if it's positive to get you on an thyroid medication which would vastly improve your depression to begin with.

Then too, Aks him/her to test your vitamin D3 status. if it is anything below ~50 ng/dl there is no way to cure/put in "remission" LS without raising your Vitamin D levels.  Please have hope I'm so gald you foudn this wonderful forum. Please do rad my recent itemization of what I discovered about this disease.  Put in the patient search box on the right the phrase, Maintenance/Recovery Premise from Lichen Sclerosus. 

Also another LS patient, Starlight, posted a list of actionable items to help with the external issues.  Oops I've forgotten the title of that, but put in Starlight and it should pop up with what Ann has posted in the last few days. 

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oops sorry for so many typos.. my fingers are cold from the ice storm in NOrth carolina and never warmed up today... smiles.

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Oh dear George I was saddened to read your post sweetheart and so sorry that you have cancelled your wedding. That is tragic. 

You know George this ugly 👹condition can be managed. Woman who have it and research has shown it is linked to our autoimmune system. 

What is your LS consultant prescribing for you ?? 

I have had LS for 17 years now and in that time experienced several years in remission.  I have got fusing and my clitoris is hooded but it still ‘works’ 

I chose to go with the approach I would manage LS not it manage me.  on good days that’s great but when you feel down it is hard to get past the pain and discomfort of it. 

I try as far as possible not to have sugar, dairy or chocolate.  Still drink red wine (for medicinal purposes) 😉 but not copious amounts  Eat lots veg fruit pulses etc., drink water at room temperature 

Choc sugar and dairy all foods that overheat our bodies. LS thrives in over heated bodies !!! 

I have tried lots creams potions and ointment but lately found to keep it simple works for me. 

Clobetasol I find too intensive and it actually made area more sore.   My consultant said to go down a notch and recommended Betnovate ointment which isn’t so strong and certainly works if I have a flare up or discomfort. 

I wash with Dermol 500 and sometimes use it to moisturise after going to the loo. I bought a portable bidet (off Amazon) ♥️ it. 

All in all George it seems lots of trials and errors but know that you will find a winning formula for you and life will suddenly See a whole new You. 

Sending lots HaPpY Healthy vagina wishes George   

Take care 

Keep in touch with us 

Love 💖 X

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Just a thought, george32756, my GP told me that steroid cream (clob or similar) can reverse the fusing and it seems to have happened with me in one area.  I suspect if fusing happened a long while ago the steroid might not be able to do this but this might give you a little hope? Also you could go into remission and no further fusing will occur for a while. As I understand it remission is more common for younger women than post-menopausal like me. I hope you have the steroid to use.

​I think it's tragic you have felt the need to cancel your wedding and really feel for you but there may be some relief to come. 

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Morning George I have re read your post several times and your women friends and family will certainly understand this hateful condition.

As you inform them that is recognised to be linked to our auto immune system   That men women and sadly children can suffer from it.  

If you were to tell your friends you had been diagnosed, say with diabetes for example you would get their support and understanding. This condition will get the same response because they are your friends and family and love you ♥️

Even if you choose to discuss maybe with one or two women it will give you the confidence not to bare this alone.  You could be surprised,  maybe they already know about LS. 

Your fiancé is special to you and you to him.  Otherwise marriage would not have been arranged to cancelled 😨 together perhaps you could enjoy, for the moment a different kind of intimacy.  Probably you do all the work 😉 but finding out about each other and enjoying the closeness that can be achieved is amazing ♥️♥️

Please George do not be alone in your head with this 👹 condition and it may be you will feel relief so have less stress which can only be good in the long run 

🤗X

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No I haven’t as I’ve onky very recently found this group. That is going to be sooo hard as I am a huge foodie but anything is worth a shot at this point! Thank you for the reply xxx

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Thank you so much Susan. 

I agree. It is so nice that your all here! If only we could all meet In real life for a coffee! I do tend to come on here every night and have a good read. I just can’t wait to reach a point where I’m chirpy and optimistic like you guys. 

I feel like I’m in the darkest of places. This thing has taken over my life. 

My partner bless him is amazing. He loves me very much and is trying his best. He’s gutted I’ve cancelled the wedding but I just can’t see it’s fair to marry someone knowing I may not be having sex soon. I just see it as if you love something or someone let them be free xxx

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I guess I am planning on being alone. 

We have been together 10 years and have 4 children together. 2 together, the eldest two he took on as his own. 

I love him so much but I look at him and think how can I make you just cuddle

For the next 40-50

Years! I look at it as I’m ending it on good terms and we’ll both hopefully be in a good place with each other. It would break my heart if he had sex with someone else 10 years down the line. He’s never been unfaithful but having no sex when there isn’t anything physically wrong with you must be hard. 

I can still have sex at the moment but I tear every time and can barely fit him in these days 😩 this has all moved so quickly. I can’t get my head around it. I think when the day comes that I can’t, that will have to be it. I’ve just ordered some vaginal dilators though so I hope this helps! I’m praying to god! 

I’m like you! I still want sex so it’s hard to not be able to participate as much as I’d like too.  Xxx

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Glad to hear you are feeling better. I’m currently having a huge flare up now. It’s awful isn’t it! Us poor ladies and what we’re going through. 

I need to look into this new diet! All I keep thinking is what am I going to eat?! Xxx

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Thank you so much for both your messages. It means so much to me to know your there for me. 

I too find the clob so harsh! It takes the itch away eventually but I’m left so very sore and fragile! I am going to ask my doctor for some betnovate this week. See if that helps?! 

I’ve also just read a post about lidocaine helping to numb the area so I’m going to invest in some of that too. Lots of wonderful things to try. Sadly I feel like it’s all come so late. My stupid doctor kept misdiagnosing me with thrush even though her tests that she sent to the lab were negative! She did 7 in total over 15 months! I ended up taking myself to a sexual health clinic and she told me what it was straight away! I was so relieved to begin with! Finally a diagnoses! How niave I was. 

If it hadn’t of been for my partner I wouldn’t have made it so far I don’t think. He’s been great. I on the other hand just feel so black about it all. 

Going to try my hardest now to get myself into remission. Doesn’t sound easy but j can’t go down without a fight can i? 

Thank you for your beautiful Message. It really picked me up and made my heart feel warm xxxxxx

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Dear George, 

George, please please go get vitamin D3 today at least 5,000 and take 3X a day, also pickup Vitamin K2 which is needed to move calcium to the right places apparently.  I foudn one woman on this site form a couple years ago who went to a naaturpath who told her about Vitamin D deficiency and autoimmune diseases. This was jsut before christmas and going to visit my daughter a 22 month old grandson. Oh my GOD! If I hadn't oudn that one comment I don't knwo if I could have stood the holidays 4 hours away from home. George, the itch as GONE in 2 or w.5 days - gone.  I still had to deal with the open sores and those cleared up within 2 weeks. BUt I think acupunctur also helped with this 3 week process.   Now things want to slide backward so I am taking allthee lovely ladies advice and "biting the bullet" of eating a mostly anti-inflammatory diet.  but FIRST as I read and read, I've come to realize - or remember really, that skin ailments of any sort represent a overtaxed LIVER.  SO, I've just started on Milk Thistle live cleanse for a couple days. 

SO, dearheart, get your whole family in on the new refreshing super healthy for lifelong HEALTH of their own, HEALTH FOR LONG LIFE EATING PLAN.  LOTS OF KALE Steamed, drizzle Flax oil on it YUM! walnuts YUM. non-inflammatory meat, like turkey, fermented dairy only, like kefir, plain no fruit sugar, yogurt, ditto. RAW cheese might be okay but LISTEN very carefully to the small signals of our body. Teach those precious 4 children to learn how to listen too.  Make it a game. 

I have started comparing notes on the autoimmune diets I see and difference between that and the anti-inflammatory diet suggestions.  I personally have always been a "everything in moderation gal".  we might hav to START off with a CLEAN HOUSE highly restrictive diet - see if even a week of that is enough. But it makes no sense to me to tell me that blueberries, a highly nutritious anti-inflammatory fruit should be on the NO list because it is fruit?!  I notice that berries are on the okay list of some lists. Just for some suggestions. 

RIce is not inflammatory, I've learned, so maybe you can get your kids of reading age to look up the diets of those cultures that LIVE on RICE as their main stable.  ONe image in my mind: When I was doing a one week summer camp for intuitively gifted kids, one year we had a family come to the states form HONG KONG! The mother brought with her a large family sized rice cooker for the 4 of them and they brought that to the table with them every meal - every meal. of course they found vegetables on the buffet at the resort... but geesh.. american's overcook their veggies big time.  

I just know that you being a "foodie" will find plenty o enticing recipes - that everyone will eat. get your kids to look up the benefits of each vegetable's mineral content - wow. 

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Susan I am with you every step of the way   You go girl ☺️X

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Hi only me sweetheart 

Everything is a balance for life even with the ugly 👹 LS   

I know it’s hard, but have a little patience. This ugly sneaky vile condition creeps into your life slowly then BAM 💥 you have to find out how to deal with it. 

I have to say I have never examined myself so much as I have in recent years 😳 and I am 67years   I know architecture has changed in my vagina but since I changed diet all the colour has returned   I am now in the ‘pink’ 😊

Some women have said their fusing has reversed   Mine hasn’t but actually that’s ok by me cos my hooded clitoris still works 👍🏻

Actually, the women on this site know more than the professionals cos realistically their treatment for LS  hasn’t changed in at least 30 years  !!! 

Starve LS of the foods it loves to thrive on, use good moisturiser like coconut oil and hey ho you’re playing sex games with your partner  ☺️  again.   Variations on a theme do work wonders.  

Try a little lubricant for ease and perhaps vibrator for access. 

Using Betnovate ointment and perhaps anaesthetic cream after sex to ease discomfort if necessary. 

Hey foodie there are some wonderful healthy foods that don’t contain massive amounts of sugar or dairy but will turn your head 😋

George you can and will manage this but it takes a little time to get your plan together.  

You know like diet, ointments, moisturiser etc., It has take a while for LS to getcha, so it makes sense it will take a little while to find out what works for you.  

Try not to be down sweetheart there is sex and life at the end this tunnel you’re in. 

Come on Georgie pop up and know that you are stronger than you realise.  

You can knock LS into touch 👊🏻

With the right support and mindset we all can ☺️

In meantime Love n Peas X