So depressed :-(

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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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  • Posted

    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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    • Posted

      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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  • Posted

    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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  • Posted

    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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    • Posted

      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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    • Posted

      George you are very fortunate to have found a man whom you love and he loves you ???? Hard to find I’m this crazy mixed world 🌎 

      How about a compromise which doesn’t include ending something amazing 😊

      It is spring tho very chilly willy 

      which leads me onto this : 

      You have been together with your wonderful partner/husband for 10 years have four beautiful children so how’s about you change mindset and say right LS I’m gonna getcha ya, you ugly little fecker👊🏻

      Give yourself one month of say  using steroid like Betnovate ointment daily x 2 with your flare up  and follow simple washing procedures using lotion of your choice (example Dermol 500 ) after toilet (buy portable bidet got it off Amazon ) ?? Love mine 

      No sugar dairy or processed food or red meat   Lots room temp water 

      I know with four children you must be run of your feet but try take a little time for just you 

      You kind get on top of this George   You are a strong woman who has not been on an easy road 

      Together with your partner and a little more time you can both make a difference to each other in a very positive way. 

      Hey BTW I had for breakfast this morning 2 eggs mushroom sausages from Sainsbury’s tomatoes and toast 😋😋😋

      Anyway George have a little think 🤔.  You have the support a massive love and a strong heart. 

      You can do this 💃X

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  • Posted

    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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    • Posted

      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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    • Posted

      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

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    • Posted

      George, george, oh please don't give away such an amazing man - OR the love your children need and YOU need.  there ARE solutions.  read all these lovely helpful suggestions AND please pleaes look up my round up of the research on VITAMIN D. Maintenance/Recovery for Lichen Sclersus is the title. I have a friend who  cured herself of breast cancer 15 YEARS ago with VITAMIN D3. It is becoming much better known now. Do whichever creams and pain relief things that feel right for you , but pleae please work on the SOLUTIONs from the INSIDE not just the palliatives.  I'll post a whole protocol of supplements that can resolve the immune issues as soon as I can tonight. I know how important this is for eveyone STAT> blessings. 

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  • Posted

    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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    • Posted

      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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  • Posted

    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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  • Posted

    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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    • Posted

      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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