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First hospital appointment, come out confused

Posted , 6 users are following.

lj2821
lj2821

Hi everyone this is my first post but I really could do with getting this down! 

Back in October I started to get thrush symptoms with an intense burning and itching and went to the gp. Got treatment which helped but only briefly. I then spent the next 4 months back and forth being told I had a fissure, allergic reaction, piles before finally being diagnosed with LS. I was given clobetasol and followed the guidelines which helped and I was reduced to using it every week or so. I went to the appointment today with the dermatologist today feeling positive. 

Generally it was all ok, definitely LS explained my medical history (hyperthyroid, b12 deficiency) and then she examined me. She told me that there's some fusion around the clitoris but as the sensation isn't affected that's fine and they'll see me in 6 months. I hadn't even noticed any fusion. I've just examined myself again and there's literally know inner labia. At all. As long as I can remember it's been like this I've never noticed any changes. Occasionally it's rubbed or felt tight but I've always remembered it this way. Now I'm struggling. I thought it wouldn't be that bad but I'm terrified. I'm 28 with a child but want another just not yet. What if it gets to the point when I can no longer have sex? How will my marriage survive? 

I feel quite confused, upset and feel a bit deformed now struggling to get my head around it when I thought everything felt and looked normal.

 Sorry it's a long ramble but I just had to write it down

3 likes, 5 replies

5 Replies

  • bennetta
    bennetta lj2821

    Posted

    Hi!! I'm around your age (27) so I know the pain you're feeling regarding your marriage/sex life. While I do not have the fusing I have read other women on here about how they have reversed theirs with various methods. Also I've read some use dialators for the opening to open and/or prevent fusing there. My symptoms also started in October so it's still fairly new to me. So far I'm using clob/elidel as needed and I can keep it under control. I also use atarax when the itching gets really bad and the creams haven't kicked in. Hang in there! You're not alone and I'm sure you will find a good treatment plan that works for you.
  • renee77108
    renee77108 lj2821

    Posted

    You and bennetta are very young to have this disease. There are two medical treatments you may want to research...one is a stem cell treatment and another is called the Mona Lisa Touch.  Both have been successful with LS.  There are a couple of natural treatments you can try.  To keep healed I use witch hazel in a spray bottle for cleansing.  I then dab it try and apply 98% to 100% aloe vera gel...healing, moisturizing and helps eliminate the itch...stops the thickening of the skin and restores the skin and returns sensation...if you have lost that.  Additionally Manuka honey...15% or higher...is expensive, but a small jar lasts a long time.  Take a bit out on a cotton swab and apply it at nightime and wear cotton panties to bed. The medical community recognizes Manuka honey as a great healer.  An alternative to the above is to put 2 pinches of bicarbonate of soda in 8 ounces of water in a spray bottle. Spray with this after bathroom visits and then apply organic coconut oil to the area. Coconut oil also has great healing properties...and is all natural.  These are natural remedies that work.  Steroids have side effects and can cause problems with prolonged use.  So if you want to try something more natural...go with one of the above solutions.  Many on this site have success with these remedies.  The Mona Lisa Touch has been around for about 6 years and has been found to help with LS and to help you keep a normal sex life...so very important at your ages.  Going gluten free and sugar free also will give you good results.  Many go a step further and eliminate dairy as well...but sugar is the main culprit...or so I have found it to be.  Take care!
  • Guppy007
    Guppy007 lj2821

    Posted

    Hi, your post depressed me to be honest.   I am so sorry you have had to go through that, and I completely understand how devastated you must feel.  I think your story is a perfect example of negligence, and that's the part I find depressing.  

    I think if you look at some of the older threads on this site, that might help, there is a lot of good information on this site, and more recently there was a post regarding laser treatment, something called The Mona Lisa Touch, have a look at that too, I think it  looks promising, and I do believe a couple of ladies that post on this forum have appointments to look at this procedure, of which they will hopefully no doubt let us know how they get on.

    Try to stay strong, stress unfortunately can cause flare ups..

    I am glad you found us, feel free to stick around for help and advice. xx

  • yvonne19574
    yvonne19574 lj2821

    Posted

    HI, I'm glad you got n touch with these other sufferers .Im not 28 infact I'm double your age plus but I really do feel for you but as all these other site

    ladies state there is help and various methods and practises that can help you to get things improved.I can well understand you being so upset the medical profession at times can make you feel totally confused without realising what they've said or done.Youve very right to rant and you've come to the right place. Please listen to the others helping you try not to jump too far ahead In your mind in a negative way.There is something you can do to get better control of the situation.These ladies do know by their own experience how to help.I was told at 27 that i was going through the early menopause It really upset me as I love children but four years later I had a little girl and then another girl 15 months after.

    Worrying as know can make you flare up so be as positive as you can share your feelings on here, listen to advice and know you are not on your own.

    You will be supported .So much of our time is wasted by trying to foresee the future and focussing upon that rather than making the best of the present.Im sure you soon will  begin to. feel alittle better knowing you can make a difference to your situation .Step by step it is trial and error but it's not as black as your initially thinking.

    Some medical staff are really good at explaining things and reassuring you if you have any concerns others seem to be so detached and can be quite cruel without being aware of it.

    Next time you go back be for armed with a list of questions you want clarified.Maybe others can offer you some tips what to ask.

    Good luck and don't give up , life is never as straight forward as we would like it to be especially for women .oUr bodies are fantastically complex .Im just glad our skin isn't transparent .We don't see what goes off inside we only know physically when something goes wrong., but that's the time to begin educating yourself about it, listening to others, trying various remedies

    that are safe to use as recommended by those who've had success with them.Keep in touch and all my best wishes.Yvonne

  • Morrell1951
    Morrell1951 lj2821

    Posted

    LJ, that really sucks. I'm old now, but I realize I've had it since I was 22. I started tearing soon after I became sexually active. I had two kids in my thirties. If I had it to do over, I would never have sex when my vulva are already uncomfortable. And if it hurts during sex, stop and do something different. Repeated tearing and scarring, raw areas from the friction of sex – all this leads to more disfigurement.

    Just so you don't blame yourself – as Dr. Goldstein says in the presentation (you should watch it!), there are as many as four levels of LS and you may have a more aggressive version. I've had it so long I must have a slower one. Look at the topic 'pinned' at the top of this forum – New to LS – Start Here.

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