My labia majora has disappeared! Completely freaked out.

Posted , 13 users are following.

It’s like a tunnel down there. The  labia majora has completely vanished. I’m totally beside myself, I’ve had no itching or pain. It’s been pain sailing to be honest for the last 2 months. Been applying clob cream as requested by doctor white patchesare still viable on the lips. 

Can’t find any information anywhere. Has anyone experienced this ?  What do I do now? I’m shocked! 

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  • Posted

    Hi Blueplum,

    I'm experiencing the same thing. Rapid atrophy and day by day I can see my labia (both) slowly melting away. It's quite distressing, it keeps me awake at night sometimes (the worry). I followed the instructions of the doctors to the letter (three months of Clob).

    I'm sorry you are experiencing a similar thing.

    I'm not sure what to do. I had my latest dermatology appointment last week and the doctor didn't say anything about the increasing atrophy. I think there are some people on here that try borax soaks and certain oils help, but I find oils very irritating. I'm on Nerisone now, which seems to be working far, far better than the Clob in reducing the redness and soreness. It hasn't stopped or slowed the atrophy.

    I've spent quite a lot of time looking at going gluten-free - I don't know if you have tried this - it might help.

    Stress certainly doesn't help, so as fluffy as it sounds, try to stay calm and not stress out.

    I'm also looking into PRP as a way to slow the atrophy because at the rate I'm losing architecture, I won't have much left in a year. I know PRP isn't a guarantee, but if it helps for a year, perhaps it is worth it.

    Wish you the best of health.

    K

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    • Posted

      Hya hun, thank you for your reply. It’s not nice at all with this condition & no help out there at all. How long have you had the labia disappearing mine has disappeared in 2 months I’m looking at the old pics and it’s conpleted changed. 

      I have been going for healing which has helped, I don’t have any itching just white patches which get bigger and smaller. 

      The healer recommended I stop taking any dairy products, fish & meat. Not much left in the diet tbh then as fruit & veg 24.7 is extremely hard. I’ve cut my sugar completely for a while and now on it again slightly. Not Gone gluten free as not much left in my diet. Dermatology dr was rubbish didn’t even look at the area. The gyno was ok - given dermotvare ointment which stings so back on the cream. Am juicing celery juice every other day in morning which has helped.  

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    • Posted

      Hi Blueplum,

      No worries, happy to share. It does feel like there is little help out there from the medical profession, I feel that too. I feel as though we're given steroid creams and told "well, that's all we have". It's frustrating, but thankfully we have this forum and there are a lot of experienced, knowledgable and helpful folk on here, so at least we're not alone.

      I think my atrophy started before I noticed it. I was diagosed with LS in November last year after a horrific bout of thrush. I hadn't examined myself for many months, so I wasn't aware of changes, but I noticed my outer labia looked a bit wrinkly, that was about 4 months ago. I look every day now to apply a cream and I've started seeing my inner labia start to melt away as well now. It's been very quick, within months of diagnosis. I wonder if the ointment actually progresses the atrophy, although I'm sure the doctors would say the opposite is true.

      I don't think anyone really knows how to deal properly with this disease. The medications help to deal with the symptoms, not the underlying cause.

      Do you have any other autoimmune issues. I am borderline hypothyroid. I've been that way for a long time, my GP says it's only a matter of time before I need medication for my thyroid. I've done enough reading and research (from research papers, which I trust) to convince myself that going gluten-free is a good beginning. But it is very hard because I'm also vegan. And I'm reduced refined sugar, so I've had to learn about new foods and experiment.

      I'm still eating gluten, but I've reduced it by 50% and so far, I'm not seeing any changes, but the LS isn't getting worse either.

      What kind of healer did you see?

      With these restrictive diets, you have to really work hard to find new foods. I've found quinoa (yet to try it), reintroduced lentils and found pea pasta. If you spend a bit of time investigating you will find there is still plenty to eat. I take algal oil to make sure I get some omega 3s, this is very important for helping inflammation.

      I think if your dermo isn't even examining you, it might be worth trying to find someone else, that's kind of shocking. LS needs to be monitored carefully.

      Hope that was helpful. smile

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    • Posted

      Hi ladies, I’ve been so busy and didn’t have time to write on discussions. Just took time every morning to read and your discussion on disappearing labia majora is calling me. I’m getting flatter and flatter every week it seems. I know nothing about gluten but I’ll have to cut it out of my diet. Cause that’s the only thing i haven’t done yet. Ouf.... can’t even be 2 days of not checking down there or else you get a nice surprise. Sick of this. I have appointment on the 10th will keep you posted if i get any ground breaking new tips from doctor. 😘 

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    • Posted

      Hello all- So sorry to hear about the architecture changes. I am 3 weeks post- diagnosis. As per several articles I read I have implemented a low- oxalate diet ( will help with my kidney stone formation as well). This limits alot of what I thought were my “healthy foods”- ie Spinach, Sweet Potatoes , Any potatoes, whole grains. Def. wheat, all nuts, raspberries, most beans- including lentils, etc. Many foods you are eating I can’t hv., I hv cut way back on sugar, am limiting carbs, but hv not yet cut gluten. I drink tons of water and soak in baking soda baths when needed. I hv not tried Borax, but hv added Boran, Vit A, More D3, K2, Magnesium, Calcium and Folate to my Ultra Multi- Vitamin. I hv been using Emuaid and Emuaid Maxx for 17 days, all lesions are gone, all ulcers are gone, skin is starting to pink up, all pain and itching in clit are gone. I was at the airport leaving on vacation when I got the diagnosis, so I will not see my Dr. Until July 24- no steroids, no drugs of any kind. I am VERY LEERY of clob ( I hv. terrible reactions to most things) . I am slowly trying to implement different things or cut things out if I hv a reaction, but we can’t do everything at once! I am most freaked out about future disintegration “ down there” and will discuss it with my Dr. When I return. Good luck to you! 
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    • Posted

      Hi Khalila, I’ve become vegan now and along with my other issues I’ve got serious piles. Massive diet change from dairy free and gluten free now vegan all in space of 2 weeks. My piles are so so bad that I’m getting to the stage I don’t want to go to the loo. Anything you could recommend in the vegan menu to eat loads of? I’m having fruit & veg and water per usual. 

      Also can you recommend any vegan products I replacement of yogurt, butter etc. thank you. 

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  • Posted

    Gluten free. I believe that is the most important. My labia were rapidly disappearing, which has halted since I stopped eating any wheat products. I avoid dairy too, although sometimes I have a little plain yogurt, I love it. I am convinced wheat is the trigger. I have experimented a couple times in the past 10 years and I will have a flair up if I eat wheat. No question! I am 50, going thru menopause now, praying I don't get worse. So far so good... Hope you all feel better! Terrible disease!!!!

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    • Posted

      Yes Dollyllama, terrible disease indeed! I dont eat any refined or processed food/sugar, only fruit, I dont eat any dairy except organic yogurt and have not had gluten in years, still my LS progresses - im now on vitamin D, magnesium, vitamin B complex etc - blueplum, like you, my condition has only worsened - the area gets whiter and bigger areas are covered - skin looks scarred and dry and Clobetasol etc are useless from my experience, trying a new concoction from lifeworks skin essentials after reading her success story on her blog, we shall see how it works out, im all out of ideas and can only feel thankful for this amazing group!!! Lets stick together and continue to support one another! 
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    • Posted

      Hi Dollyllama,

      This is really interesting regarding the gluten. Are you diagnosed with Coeliac?

      I have trouble with oats, and wheat makes me feel bloated and a bit queasy, but I'm fine with spelt.

      Can you eat gluten from other sources without a problem?

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    • Posted

      Hi Dollyilma,  how long have you given up Gulten products? I’ve only recently started noting tastes nice, specially the bread well expensive and taste like cardboard.  
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    • Posted

      Hi Blueplum, I just wanted to add that I make my own bread...because most of the gluten-free breads do taste awful...this is the only thing I struggle with re gluten-free foods. 

      Also dont buy the ready made cakes and biscuits as they are FULL of sugar and will make you ill.  Take one thing at a time and before you know it you will be making your own cakes. 

      I am happy to give you any help regarding gluten free foods.

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    • Posted

      Hya Guppy, thank you for your reply.homemade bread sounds complicated, at the mo my ovens not working, have been it off repairing due to possible house move coming up. Do you make rolls as well? Yummy and croissants?  Also Pitta bread ? That’s one thing which I use to love can’t find a decent gluten free replacement. 

      Your quite right I’m for ever scanning the isles for biscuits/cakes but the sugar quality is in the scary high range! 

      I’ve been to Tesco, sainsburys, asda, idil, aldi everything is expensive and once purchased sum items taste rank. 

      Thanks for your help x 

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  • Posted

    I was where you are today.  I changed my diet:  no sugar, no gluten, no caffeine and limited dairy products.  I soak in borax baths, I rinse with borax after most bathroom visits, I use coconut oil to moisturize.  I was very determined and disciplined for four years.  Today I am enjoying an active sex life, yes at 68, and LS stays nicely in the background.

    Though 'the flesh is weak'.  Yesterday I ate a few pieces of chocolate.  Just because.  This morning I woke up with the tingling feeling of LS.  One weak moment and LS reacts.  So it is again back to my strict diet and maintenance as usual.  And I mixed a few drops of tea tree oil in my coconut oil.  Hope it doesn't get any worse.

    When things go well, a person tends to forget how horrible this disease can be.  

     

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    • Posted

      HI Hanny... thanks so much for that sharing. Can you please add to our mental database a bit? I haven't yet noticed if my bits of giradelli chocolate chips cause me any problems.. but I do know I get a response from sugar and I think from dairy, i think. 

      anyway, what I really would like to know is how much do any nutritional supplements help in the long run? Have you been taking or which vitamins and minerals have you been taking on at least a semi regular basis? THANKS

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    • Posted

      Hi Nancy,  Sorry for my late reply.  It's Summer and we're out a lot.  

      As for your question:  For the nutritional supplements I went and asked for the help of a nature path.  What you need may not be the same as what my system was lacking.  Ever so gradually I noticed a difference: more energy, clearer mind, stronger nerves, less prone to infections.  I'm doing this now for about four years and now have gradually been reducing the amount.  (also for economic reasons)  My system seems to hold out well.  The LS has not acted up as long as I'm sticking to my routine.  The odd exception.  It will perhaps always need this daily routine, but it's very doable.  

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    • Posted

      YEs thank you... but my interest is or all of us; I'd really like to know which ones? 

       IF we were able to do a tally, even just whoever is showing up here now of WHICH vitamins and minerals and other supplements each of us is taking we might be able to see a pattern.. and I'd be particularly interested whether most of us are taking Vitamin D3 since a deficiency of it has shown up in SO MANY medical issues

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    • Posted

      Hya handy, thanks your your reply. It feels like it’s always there can’t forget. Since changing your diet have you noticed any shrinking? I’ve personally got no itching, white patches are there staring back at me. Do you think borax would like In stopping the labia minora for disappearing? 
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    • Posted

      Just wanted to weigh in ladies. 6 weeks since dagnosis, all has been calm since I used the Emuaid, changed my diet, and added supplements- UNTIL last night! I had a small handfull of plain M&M’s, thinking “ what could it hurt? “ By bedtime clitoris was a little itchy, this morning things were still a little itchy, put some Emuaid on it and it was gone! BUT, had to be the chocolate! Only time I have deviated from eating plan- dammit! My love affair with chocolate is over! 😢😬🙄😥

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    • Posted

      I’m now taking these supplements:

      Ginger

      -Turmeric 

      -Vitamins D3, A, E (&C only infrequently)

      -Magnesium (I use Natural Calm powder and may add a different type of mag)

      -Marshmallow (look it up!)

      -Pomegranate (another good anti-inflammatory)

      I still need an Omega but haven’t found one I like or agrees with me. 

      My current routine for treatment changes as one thing doesn’t work for long. This week along with aloe gel & turmeric essential oil (per Nancy’s post) I’m using emu oil for the first time and it’s been very soothing.  Baking soda water squirt bottle rinses after using bathroom every time and moisturizer (above) each time as well. I’ve backed off the borax solution , I just can’t seem to keep up. 🤪 But will make sure to do that tonight. Usually use a cotton square gentle compress on fused area, air dry. 

      💜

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    • Posted

       Ow to clean up my diet. I’ve  cut back on the named culprits but haven’t cut them completely out yet... I live with my daughter & family and she does most of the meal planning & preparation... it will be hard but I’ll find a way. 

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