New Possible LS Sufferer With Anxiety

Posted , 11 users are following.

Hi guys. First off, before I introduce myself, I beg you: to other new or old LS sufferers in a state of panic or who have horror stories, please post elsewhere, I want this feed to be totally zen and calm to keep my anxiety on the downlow. 

I'm Kat, I'm 23 and I've suffered for about 2 years with terrible cracking of my vagina, tears and general agony and burning after sex. Occasional mild itching, but generally, it's been sex. Nothing has helped, and after years of doctors telling me 'it's thrust - treat you and your partner, abstain', nothing has changed. 

I've noted little pearly white crinkles either side of my vagina for a couple of years now, but I always thought they were just part of the skin that everyone had. After all, no doctors or gynos picked up on it.

After googling it, it all makes so much sense now. I'm seeing my doctor in 4 days (09/02/15) and insisting she checks to see if it's LS, but I don't think I'd even need to at this point, but it's the natural avenue to getting treated. 

She's given me betnovate in the past, but it just made me inflamed, I suspect it's due to actual thrush being present when I used it. 

I suffer from crippling anxiety, I've been treated for years and I'm in therapy. I'm also self confessed cyberchondriac, but this is one of very few cases that I believe lead to a genuine answer. 

I'll be honest, I'm terrified. I'm terrified of fusing (which doesn't seem to be occuring), I'm terrified of my pain increasing over the next 60 years, I'm terrified of getting to a point in my life where I have lost all sexual function, and mostly, I'm terrified of the obvious big C (I can't even read the damn word without my heart rate speeding up). 

My labia minora are abnormally small and always have been, could this be as a result of LS? What are the white crinkly bits, are they scars or do they fade with the (correct) stereoid cream? 

Please help. Show me some positive stories. Have any of you lived with it for years and been happy? Is it really the end of the world like people make out it is, or does it not really interfer with your life all that much? I'm worried about being paranoid about my vagina for the rest of my life. I've already had my cervix caulterized. I'm sick of it and terrified. 

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16 Replies

  • Posted

    Honestly I freaked when I was diagnosed but after being on treatment I feel normal. My husband and I have returned to our normal routine and things feel great. i assume if we are having sex a few times a week the opening won't be able to close anyway. I did notice the skin above my "c" coming down but that has stopped. Another positive there is a lady here who did fuse shut but I believe she is back to "normal" in that area. I do still have the discoloration so not sure there. I'm also in my 20s. Try to stay calm, there are multiple treatments available and most importantly know you are not alone. I felt horribly alone but I found this group and am grateful for it.
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  • Posted

    I keep  losing my emails. So I will keep ths very brief. I have suffered for over 30 years. Have had the white bumps, the krinkles, the grayish white skin and the purple.

    and also fused.  Today I have pink healthy looking skin and the fusing has lessened considerably. I am still working on it.

     The  indescribable itch that plagued me for all those years has been gone for

    a year. I use a baking soda spritz and keep well lubricated with coconut oil (not for

    everyone)  I do believe that keeping lucricated is one of the big secrets. Find what

    works for you.

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  • Posted

    Well, no, LS is not the end of the world, but something one can overcome, control and learn to live with. 

    I don't know whether this thougt is of help - if I knew then what I know today,  I would not have had the total fusing that eventually appeared.  You are in the very early stages and have already been diagnosed.  Chances are that you will learn to control your LS much easier than I.  

    I encourage you to read the discussions and form a good idea of how to control your LS.  There is a lot of very good advise and positive experiences on this forum.  

    We're not all the same and most of us got wiser by trial and error.  I can tell you what helped me and what made my fusions melt away, and perhaps it works for you as well.  (the bicarbonate/baking soda and coconut combination)  But then again, you may feel better with different oinments and such.  

    By now I am a bit apprehensive to tell you what you should do, or what not to do.  I've told my story a couple of times on this forum: next to globetasol, I accidently discovered that the combination baking soda and coconut oil melted away the fusions.  And it did.  I was totally fused up and now I'm having a gently intimacy with my husband again.  Perhaps it gives some kind of hope.  I don't know.   

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  • Posted

    Hi Kat, bless you, you are having a rough time of it.  this forum is the best thing that I have found since being diagnosed with LS so well done for finding it too.  I have had Fentons Procedure in December 2014 and I am now healed from that ,  my LS was very problematic as like you I was diagnosed as Thrush for a long time.  Anyway to the good stuff which is what you want.  I have found that a gentle warm salt bath soothes the area.  I ordered a plastic Bidet that sits in the loo so you only need to bathe the area you want to and not all of you.  I use Epaderm cream to wash and moisturise the area (on prescription from GP) .  I have found that stress can trigger it off or make it worse, so please do try and relax when possible.  I have eliminated Alcohol from my diet and as much sugar as I can.  Stay away from anything acidic like fruit juices etc as this makes the urine and sweat strong which makes you more sore.  Wear cotton undies and let the air circulate when you can.  I have bought crothcless tights from Amazon for special going out as Stockings are a joke!! :-)  It sounds like you need to get whoever your next appointment is with to listen to you properly.  Can I suggest taking a friend or your husband with you to help.  I know it is very difficult to say everything you want to when you are upset.  This forum is excellent.  the ladies on here are all willing you to get better.  we know it isn't curable but we can get ourselves to a stage where we can live with it.  I am 63 so a late sufferer.  I really hope some of the things I have said will work for you,  it really is a case of trying and seeing what works for you.  We all have skin sensitivity and some things affect us more than others.  try and find out what it is for you by elimination.  most of all don't give up,  i truly understand the dispair you are feeling right now but there is light at the end of the tunnel.  stay on here and keep in touch we are with you all the way.  good luck with your appointment. Ros x
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  • Posted

    Hello guys, thank you for your replies, you've all been very speedy which I think you for. Some of it has provided mild relief, but honestly, I'm more frightened of the fusion now than I was previously. 

    I've not experienced any fusion so far, or so I believe. I am having regular intercourse and haven't split in a while. You can be totally honest with me, because I need to know what to expect. If I'm in the early stages, where it's mostly just pain and soreness after sex, and the pearly white dots, should I expect fusion to happen, even if I start treatment now? Is there anything I can do to prevent it? Or at least slow it down? 

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    • Posted

      Hi Kay I was diagnosed in April 2014 so fairly new to it. I have to say though, this forum has helped me considerably. Not sure if you take supplements but I take zinc and vit c plus probiotics. This reason for this is to readjust the immune system. Plus the bicarbonate and loads of lube. It's all about what you eat also. I have cut back on sugar and alcohol. Also glutton can be a factor..take care.
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    • Posted

      Hiya Phil, 

      Well I actually do take zinc daily, it's one of the few that I do take, next to calcium and vitamin D, so that sounds positive. I also don't drink! 

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    • Posted

      Start with baking soda/bicarbonate rinsing after every bathroom visit.  (three pinches of baking soda in a 250 ml spray bottle, the kind that women get in the hospital after giving birth, fill with warm water)  Dry and apply coconut oil.  The bicarbonate/baking soda changes the ph level, and has as surprising result that fusing seems to melt away and doesn't easily come back.  A person has to be very diligent about this, it's long term treatment that makes the difference.  

      Take note of the diet - no sugar!  This makes a big difference.  Start thinking of living with an alkaline diet: no sugar, no alcohol, no gluten, no dairy.  It helps to prevent 'growth', like the fusing kind.

      And try very hard to avoid stress.  It's another trigger for LS to flare up.  

      Check your estrogen level.  With the use of the pill and other, games have been played with our estrogen.  Just to be aware.  

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    • Posted

      Even if I'm experiencing zero fusion at present time? I'm also having regular intercourse, (sometimes painful, sometimes painfree) which I'm assuming will lend the same job as dilating. 
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    • Posted

      In my opinion I would say:  Yes.  You are experiencing pain with intercourse and that tells me there is some fusion.  And yes, intercourse helps as a form of dilation and it is important to keep things open.  

      It is important to keep on top of things and not let them get any worse.  As I said earlier - if I would have known then what I know now, it would not have had to become as bad as it eventually did.

      Your LS was detected early.  This is to your advantage.  Early action and being aware of what makes matters worse is your utmost gain.    

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  • Posted

    Kat,  being male I don't have this problem;  but I have helped a number of girls/ladies that have been cursed with LS.

    My suggested course of action is two-fold,  external with castor/coconut oil mix.  and internal with zinc supplements 30 mgm zinc a day,  vitamin D3 4000 IU a day,  and vitamin C 2000 mgm a day.

    The castor/coconut mix is 2 parts castor to one part coconut oil;  zinc oxide ointment made with castor oil is beneficial too,  especially in cracked skin,  and like the castor/coconut mix can be used internally in the vulva too.

    Both the oil mix and the zinc oxide ointment should be applied to prevent urine making contact with the vulva tissues,  and the area rinsed with plain water after urinating.

    Where possible go without panties,  get as much fresh air to your vulva as possible,  I notice one lass has used crotchless tights,  allowing warm dressing but air to the vulva.

    Try to avoid the pharmaceutical approach,  some of the substances used in maufacture can be very irritating.  Never get soaps and bubble bath  neart your vulva,  just wash with plain water using your hand,  no cloths;  and dry with a hair dryer set on lowest heat,  do not rub with a towel,  pat dry.  The hair dryer is best.

    I hope thisc sets you on the road to recovery.

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  • Posted

    The wrinkling, and white blotches of skin will improve. I am an African American woman and my worst fear was that I was going to have white bits for the rest of my life. I have been usintg clobestrol ointment and I can happily report that both the wrinkly skin and white blothes have demished drastically. I have been using the ointment for approxamatley 3 months with the last two months decreasing my usage. The color, which was my main embarassment has started to go back to normal. Changing from bleek white blotches and streeks to now almost back my normal color. I have noticed the skin appears more smooth and less wrinkly with it's normal elasticity. The one thing I have noticed is that my improvement increased more rapidly when I cut down on my sugar intake. 

    My advice would be not to freak out and listen to you body. Some of the things you may have to do to get it under control may be a bit trying at times but once you find what works for YOUR body it will be like second nature. Communicating your concerns and changes or lack of changes with your doctor is a must. They have to know what's going on to be able to give you the right treatment so no matter how embarassing it may be keep the communication open no matter how big or small. Sending you healing hugs : )

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  • Posted

    Kat,  a couple of points I missed (late night postings!);  I suggest trimming/clipping of pubic hair to 2 - 3  mm length,  do not shave wit razors of any kind,  but in a month or two you can use an electric shaver.

    Use and rub in the castor/coconut oil mixture 3 times a day,  gentle massage is the key,  pat any surplus off with toilet paper.

    The zinc oxide is white,  you can also use pink zinc,  this is just ordinary zinc oxide coloured with very fine red oxide of iron;  just make sure that castor oil is the dispersant used in the formulation.

    You may find that emulsifying ointment can be used as a cleanser,  it is gentle and turns milky white with water.  It can also be used as a urine barrier,  but needs to be replaced after each voiding.

    The oily mixture can be used as a personal lubricant.  or you can use straight coconut oil;  both are ideal as they do not irritate nor dry out like water-based lubes.  Coconut oils is NOT latex friendly;  urathane condoms are OK with coconut oil.

    This is a long-term treatment,  if you are using clobestrol or other corticosteriods,  try to introduce the castor/coconut oil mix slowly so that you are alternating the medication and oil mix,  graduially increasing the oil mix to replace the medication.  Your body's reaction will guide you here.

    Best wishes,  and keep a positive outlook;  time is on your side.

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