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LS and new to forum

Posted , 8 users are following.

em100
em100

Hi!

Very happy to have found and already replied to a few posts on here!

I am 36 and have 3 children. I was visually diagnosed with LS by a doctor at a GUM clinic many years ago. I had little help from my GP at my local surgery. For years she gave me thrush cream and sent me away. I had to ask her to examine me and when she did she just said she thought I had a sti and to go to my GUM.

I am so greatful for the lovely doctor who treated me at the GUM and who has been helping me up until now. I have only ever had 2 small splits, both responded well to steroid cream. I now use it once a month and ointment daily as moisturiser.

I have been going for yearly checks and she always says how well the areas look and she has no worries. This last appointment she told me the clinic is no longer funded to treat these types of conditions. She wrote to my GP who referred me to a gynecologist.

The gynecologist was rude and said he wanted a biopsy before going any further and was shocked I hadn't had one before.

Looking for a second opinion I paid privately to see another gynecologist. He was much nicer but he seemed concerned by my lack of 'plump labia' I said I had felt I'd shrunk a little but I wasn't overly worried. He said it could be a precancerous condition and wants to do a vulvoscopy. So I have agreed and will do it on Monday. He did say I could wait a few months but I just want it over with.

I'm so confused as I have no symptoms and I feel really well!!? Before the steroid cream I had the awful itch and the splits were so painful. For years now that has been under control. I might have one flare up in a year and it's mild, a day or two at the most. Surely I can't have VIN or something worse?

I feel my initial doctor was so calm and happy and I have found the creams to work well and in the space of a week my world has been sent into a panic!

Any advice very very welcome xxx

0 likes, 20 replies

20 Replies

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  • Guppy007
    Guppy007 em100

    Posted

    Hi em, Well, I think everyone knows by now my thoughts...you aren't seeing the right people...the comment "concerned by my lack of 'plump labia'  says it all really. 

    Anyone that is familiar with Lichen Sclerous, any doctor that knows LS would know that's what happens with LS!! 

    I just feel too frustrated with the lack of care we receive. 

    Maybe have the vulvoscopy for peace of mind, as it sounds like he's frightened you.

    • em100
      em100 Guppy007

      Posted

      I definitely feel frightened! I've spent years happily managing the LS and not really worrying too much about it. Then wham suddenly everyone wants to cut bits out and tell me my labia aren't plump enough haha!

      I am going ahead woth the vulvoscopy and I pray nothing is wrong! I certainly don't have anything visable that worries me.

      Where I go from here on long term care i don't know. I think i will try and contact the GUM clinic and ask of my previous doctor knows of any more suitable doctors/gynecologists/specialists

    • Guppy007
      Guppy007 em100

      Posted

      Hi em, yes, having the  vulvoscopy will give you peace of mind short term.  I would definitely want to look elsewhere for future care. 

      Let us know how you get on.

      I am sure you have nothing to worry about as he hasn't actually said that he has seen anything to make you think otherwise.

       

  • sarb73328
    sarb73328 em100

    Posted

    I feel for you, Em. This doesn't make sense when you have been managing LS successfully all this time.  I have never had a biopsy to diagnose - just a Gynae examination and at the moment being treated by my GP. As I understand it steroid cream thins the skin so that would be why labia are not plump. i also think low oestrogen causes labia to thin out.  I have had a colposcopy but what is a vulvoscopy? Good luck and keep us informed please. 

    • em100
      em100 sarb73328

      Posted

      Thanks smile

      A vulvoscopy is when they use a big microscope to look at the skin around and on the vulva. Think put some kind of solution on the skin first, it stings apparently! Then they can identify any areas that may need a biopsy. LS shows up in a certain pattern I've read so I assume this is a diagnosis if they should find that on my skin?

      I felt this was a less invasive first step. Having a biopsy scared me so anything to avoid it! It sounds silly but after years of care with my last doctor i felt so relaxed and never worried about things.

      Just want Monday over and done with. I shall let you know!

    • cathey77872
      cathey77872 em100

      Posted

      Don't Be afraid of biopsy, there is nothing to it. It just help confirm diagnosis. I have been suffering with this disease for 3 years now. As others prescribed the clobetasol ointment. When I first used it, it did go away for several months, but came back. Then she prescribed Premarin Cream and it worked for a while, but it's back with a vengeance this time. I agree it has to do with hormone imbalance and autoimmune disorder. I'm 66, had complete hysterectomy at 35 and last year I ended up with hypothyroidism which is a hormone issue as well. I found a post just searching on google. It pulled up this website and the girl was talking about natural remedies. For some reason I can;t find it anymore. It was a 3 year old post. I'm going to do my best to try a natural remedy. I will keep you posted if it helps in any way. I feel so sad that all of us have this terrible situation.  smile

  • ellen61061
    ellen61061 em100

    Posted

    Dang Dr's. I'm just like you and recovered. My doc gave me an estrogen cream after my LS went away and it plumped up my peach. Looks perfect now like nothing happened. Keep searching for the right vulva clinic or professional.

    Xo

    • em100
      em100 ellen61061

      Posted

      I will definitely ask about this cream! I think it's so great that this forum allows us to share our experiences and treatments that we've found useful! Thanks so much

    • ellen61061
      ellen61061 em100

      Posted

      Actually a gel Estreogel. Plant based.

      Life changer. Plump and moisture has returned. Sex drive way up.

    • cathey77872
      cathey77872 ellen61061

      Posted

      Where can you get this?. Is it prescription or can you order online?

      Thank you

  • karen23320
    karen23320 em100

    Posted

    Big breath Em! Relax! A very , very small percentage of LS turns cancerous. Usually a biopsy is done if there is some doubt that it is LS or there is a suspicious lump or growth. Because you are asymptomatic and all seems to be under control you could probably skip the biopsy- seems like Dr. Are so quick to insist on one ( or in my case 6 at one time- all 6 came back positive for LS). If your Dr. Is really pushing for it he mat see something he hasn’t mentioned- they don’t say much! Maybe do it for your own peace of mind, but not to panic- stess causes flare- ups! 

    Good luck to you and keep us updated! 

  • jacqueline96242
    jacqueline96242 em100

    Posted

    Good luck for Monday! I’ve just been diagnosed with early LS. I’m trying steroid cream at the moment as the doctor prescribed . I had a colposcopy and biopsy done at the same time a couple of weeks ago. Biopsy came back as LS as suspected . They numb you to do it , just a quick nip and it’s all over . I had a dissolvable stitch and all cleared now . So don’t worry  , at least you will get definite diagnosis and make sure there’s no pre cancerous cells ( vin) . It’s worth it for peace  of mind . I think I can now deal with it and take advice from all these lovely ladies on here that share their experiences. 😄

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