LS returns after years of remission?

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I am 30 and was diagnosed with LS maybe 8 years ago. When I first got it, I had no idea what was wrong. I kept treating myself for a yeast infection. The doctor finally sent me to GYN and they did a biopsy. they suspected LS but the biopsy came back lichen simplex. I dealt with the issue for maybe a year and then the symptoms went away. Now, for nearly a year I've been dealing with really aggressive symptoms. Month after month I have issues. I use my clobetasol 2x a day most days. It seems my symptoms flare up 2 weeks before my period. This is having a really negative effect on my relationship. I worry a lot about fusing and what's happening to me. I'm so young and want to enjoy a normal sex life and have children one day. I haven't seen the GYN in years but have had normal exams with my regular doctor. At this point, I don't know what to do. How do I keep this under control? Why the remission for 6+ years? I have been under extreme stress over the last 2 years with the passing of a family member.

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  • Posted

    Hi Kelly, you have come to to Best forum and you will find much good information and support here. There is one forum on here called "an experiment with Borax" . Please find it and read the thread t hrough! Plus there are many threads to read here with good information and support also. I was diagnosed about 8 months ago after self treating, unsuccessfully for about 6 months. After I tried the Borax soaks and the saturated solution I have been off the Clobetasol and am completely symptom free! No itching, biting, stinging, tightness etc!

    Also my Gyno told me to use Vitamin E frequently as it will combat the thinning the Clob causes. I also use Pure Olive oil and Coconut Oil to moisturize. God bless you

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  • Posted

    Hi Kelly,

    Maybe you could explain to the dr your concerns about worrying it's getting worse and you'd like more information, it's your body not theirs.  I think I was like you treated what I thought was fungal with over the counter things but stupidly should of got a mirror and looked but I never did, I'd never heard of L S there only thrush, mmm I was very in edecuated about that department in that respect.  After I came in here and read so many threads I've learned a lot.  

    I swear mine came a lot last year after my Mam died and another stressor took hold as well.  I think stress does things to our bodies.  Do you have anyone to chat to about your loss?  Grief is a really hard thing to get through. Xx

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    • Posted

      If you were to be referred make sure it's one who deals with vulvar skin as they won't know as much.

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  • Posted

    I wish we could posts I meant gynaecologist won't know as much as one who specialises in vulvar skin x

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  • Posted

    Stress is a huge factor with LS so that is more than likely the reason. So sorry for your loss. Perhaps a bereavement councillor could hello. CRUISE are the society that deal with that wonderfully. Just a suggestion. They helped a friend of mine no end when she lost her husband.

    You need to be referred to a gynae/ dermatologist. Your GP is just that, GENERAL practitioner. You need to see someone with experience in this field.

    Keep reading this forum, I've found out notes on here than at any hospital.

    Lots of women find sugar is also a big trigger for flare ups. Could that be s factor with you ?

    My humble suggestion:-

    Get the referral asap, Try to get help re your loss, keep using the Dermovate. I recommend Hydromol ointment as a barrier/ moisturiser, it's brilliant. Lastly ask your partner to be patient - you're the one suffering here.

    Good luck hon, let us know how you get on

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  • Posted

    So sorry to hear it's come back. And sorry to hear of your loss. Stress is a factor, the best I've ever been (and I mean REALLY good, was when I was on holiday. Wish doctors could prescribe that! And the worst I've ever been was when my husband was in hospital with a life-threatening condition. My body (LS) reflected those situations totally.

    If you can get a referral to a Vulval Dermatologist, that's your best bet. There are a handful of clinics around the UK that specialise. It should be possible to find your nearest and ask your doctor to refer you. Or you could Google to find one. They see a lot of LS in thier clinics apparently.

    I'm another Borax user, with very good results. Find the original thread and read it through. If you decide to try if, make sure you don't get Boric Acid or Borax Substitute, both are completely different substances and not good for you...

    And this forum is a wonderful support group, read the posts and follow suggestions until you find what works for you. Think of it like Diabetes; it's in your body, but when you learn to manage it you stop thinking about it and get on with life. I hope that point comes quickly for you.

    Good Luck

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  • Posted

    Hi Kelly

    I have put my LS into remission by changing my diet. Cut out all sugars including naturally occuring, dairy and gluten and see if it does anything for you. Lots of ladies have benefitted by trying this. Good luck xxx

     

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  • Posted

    Thank you for all your recommendations and suggestions. I have read this forum before but decided I need to finally join. It's hard to have these conversations openly with family or friends as it is so private. I've tried very hard to deal with grief and stress that comes as a result, but as a primary caregiver for another family member it is tough. I am hoping to start therapy soon.

    In terms of the LS, I've scheduled an appointment with my doctor in hopes she can refer me to a dermatologist that specializes in this or at least a gynecologist she is familiar. My previous GYN has left the practice. I've noticed that my symptoms are always always always worse 2 weeks before my period. I am currently on the pill. I wonder if this has anything to do with it.

    I read through the borax discussion but it sounds a little scary. I'm willing to try diet or vitamin e oil. I just want some relief. Today I am extremely sore with some discharge. Is that normal?

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    • Posted

      Kelly, I would like to encourage you not to be afraid of the Borax. I am in the US and here we can purchase it in the laundry aisle!. I started using Borax about 6 months ago and every jone of my symptoms stopped! All the itching, burninjg, biting, stinging, tightness etc. My skin has returned to its normal co!or and texture. I have not had to use the Clobetasol after approximately one week with the Borax treatments.. It has now been almost 6 months since I started this program.

      I hope this helps and God bless and guide you in your healing.

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  • Posted

    Hi Kelly

    I know exactly what you mean about not being able to talk about it, that would kill a conversation stone dead wouldn't it? Having said that, I'm a few years down the path now and am starting to be open with a select few friends and telling them to spread the word so that other women know what to look out for.

    I don't know where you are but I tried to start a support group in my area and then life got in the way. Things are calmer now and I'm going to have another go, so if you're anywhere near Bristol/North Somerset DM me if you'd like to be involved.

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