No diagnosis! 😔

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Hello, only joined this group yesterday but I need help. Back in March I noticed my skin around my 'downstairs bits!' Had changed to a pale/grey colour! I went to my gp and she said that it looked like LS she prescribed me a steroid cream and referred me to a dermatologist. Last Friday I finally got to see her but because the cream was working and the colour had returned, I was showing no signs of LS! She told me to stop using the cream, which I did but within 2 days the itching feeling had returned and I'm now back using the cream!!! I was hoping they would do a biopsy so I could have a diagnosis! Instead it feels like I've just been left to deal with this by myself!! LS sounds scary!! Shall I keep using the cream? I need advice! Thank you!

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  • Posted

    Clair,

      Yes, unfortunately we must always use the cream.  It has on the package or instructions that its twice a day for 4 weeks then down to twice a week or something in that nature.  If you stop then it comes back within an unknown amount of time because of things that trigger it.  It sounds bad, but to me it's just dry skin in the wrong area you know.  There is no cure yet or cause.. There are many beliefs on the causes but because of the wide variety of reasons it's difficult still for the docs to know which or what... Hormones, hereditary traits, stress, ect... all go into play.  So don't be scared just be prepared for the itching and skin color changes in between times not using the cream if it starts back up. 

    Also try to stay away from soaps there except like baby wash or maybe aveeno.  Don't want to wash too much either cause that may bring it on too from the water drying your skin.  Also when having intercourse be mindful of products using too cause they may irritaate too.  Hope this helps.

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    • Posted

      Thank you for replying with your advice. Il continue to use the cream and then over time gradually reduce it to twice a week. I just don't like not having an actual diagnosis. I'm also a type 1 diabetic which is also an autoimmune disease, so maybe once you've got one you're more prone to get others!
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    • Posted

      Yes, I have a range of autoimmune diseases. I would ask for a biopsy to make sure it is LS. The ointment is necessary to keep it at bay. Also use a moisturiser such as Dermeze which is like a Vaseline. Which cream were you prescribed? 

      I attend a clinic at the Mercy hospital in Melbourne which is especially for this.

      if you have good people taking care of you they will monitor it for you.

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    • Posted

      Hi Kathleen, I don't have much confidence in the dermatologist that I had an appointment with. She didn't seem that interested. I wish I had asked for a biopsy now but she said that I needed to wait for a 'flare' up to happen before they could do anything. I'd need to take pics to show them as well. 😞 my GP prescribed eumovate cream and then it'll be changed to eumovate ointment. Not sure what the difference is?!
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    • Posted

      I was told the ointment is better absorbed than the cream. Can you find a place that specialises in this? Where I go they see it so much and have so much experience and I am seen by more than one person...several specialists at a time. Check to see if there is a clinic maybe?
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    • Posted

      Il google it. I'm in the UK, so maybe they'll be a link on the hospitals website. Bit disappointed that I wasn't given any leaflets or any real advice from the professionals. Thank god for you and everyone else on here!! 😊
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  • Posted

    It's hard to say because LS does improve with steroid creams. I have had LS foir 14 years now. Neither of my GPs recognized the disease and treated me for all kinds of things like vaginitis, thrush, etc etc. It was not until I got a patch of it on my abdomen, had a dermatologist do a biopsy that I found out what I had down below. I was terrified. I had no idea what it was nor what it was going to do to my body. Not everyone has LS progress to the entire body like me, thankfully. However, I have managed to keep it under control in the vaginal area with Clobesterol cream. The extragenital are is my biggest problem. It flares every year and I break out in a terrible red rash and itching that I cannot describel

    I don't think they do biopsies in the vaginal area, but maybe they do. Be fearful of biopsies, they cause the LS to progress. And then there's the issue of scar tissue from surgery of any kind.

    I am not a doctor, but if I found that I was getting relief from the cream, I would use it until the itching goes. Or as soon as it flares again...go back and let the Gyn see it. Please take care.

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    • Posted

      Typo in my previous reply should be "extragenital area." Also, I should have made it clearer about biopsies in the vaginal area. I actually had one, but not for LS. What I meant to say is that I am not sure if they do biopsies in that area for LS testing. A good gynecologist will recognize it without biopsy!

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    • Posted

      To be honest the thought of having a biopsy made me feel ill. My GP back in March told me that I would need one to get a diagnosis. So when the dermatologist didn't even mention it I was surprised. Maybe I can treat this myself. Sorry to hear that your LS spread and flares up badly.
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    • Posted

      Claire, You dont always  need a biopsy...any specialist who knows what they are doing can give you a visual diagnosis, some people think it can actually make things worse.  My doc took one look and said LS!!!
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    • Posted

      Yeah my dr thought it was LS but she referred me to a dermatologist and because the cream was working she couldn't see any signs of LS and told me to stop using the cream. I really think it is LS though.
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    • Posted

      My OB said they would likely need a biopsy and then my derm said no so it happens. Frankly I'm relieved, it was terrifying me.
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  • Posted

    Hi Clair

    So sorry you've had to join us, but browse this topic in this forum and there's a wealth of advice on treatment and things you can do to minimise the discomfort yourself.

    First of all liik for Dr Goldstein's webinar. It's been pinned to one of the discussions (I'm very low sill computer wise, maybe someone can help Clair find it?). Most of us have found it's given us more Ls info then we've got from our own health professionals.

    Secondly look for a Vulvar Dermatologist. There's one in Bristol and one in London somewhere I'm remembering from previous discussions. I don't know where in the country you are, but you could try a google search. Gynaes don't do skin, and Derms don't do anything under undies, so you fall between to expertises with LS, but there are a few about. Push your doctor for a referral to one, it really is important to get the treatment right. My GP tried to treat me using the clinical guidelines and I had to insist to get to see a specialist. The first thing she said was that for LS the clinical guidelines are wrong. Do keep using the cream (ask for ointment it's better for LS than cream)

    Many people find relief by using a very dilute bicarbonate of soda spray (3 pinches to a 100ml bottle) after a toilet visit to neutralise the acid of urine, followed by a moisturiser such as coconut oil, 99-100% aloe vera, or Emu oil. Stay away from perfumed soaps, use aqueous cream or Epaderm to wash with. Follow the chats here and experiment to find what suits you, we are all different. Some people have had good results with diet, others not. It varies from person to person.

    You won't find a cure on this website but you will find an active, supportive community, and lots of ideas.

    Make yourself a cuppa, and have a good browse. Pretty much any question you can think of will have been asked here, but if you can't find it, someone will offer advice for any question you want to post.

    Good luck

    Bridge

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    • Posted

      I'm starting to realise I'm going to have to go back to my GP. Without a diagnosis I know they will stop me using the steroid cream. They will stop the prescription and then il be in simple terms 'screwed'! Thank you for all your advice! Il look into all of it and hopefully get some help from a professional!! Fingers crossed!!!! 🍀
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  • Posted

    Hi Clair! Listen to this ladies change to a vulvar specialist, getting a biopsy, by that specialist of course, is a god idea because they made need to rule out other things that could look like LS, I think is really good that you have been early diagnosed most get diagnosed with fusing, thick or with peeling skin like my case.. If you do have LS and stop using the ointment ( like they say ointment is better) the disease could avance very rapidly.. Also the coconut oil did wonders for me because eventually the dry skin could start to tear which happened to me. Once the diagnose is confirmed diet is crucial, my specialist told me to go gluten free for life, you can do some research on how many can control chronic inflamatory diseases with diet, because once you have an issue in your gut over the years it becomes a systemic inflamation and you begin to experience autoimmune disorders and other diseases, I could eat anything without experiencing trouble then I got checked by a molecular specialist and it turned out a had an intoxicated liver, like gut in general and a systemic inflamation and candida overgrowth, he told me that was the root of everything so know we are doing a kidney and colon cleanse, probiotics, I have already change to low oxalate, free gluten and no sugar diet.. All of this things are just me, you need to start trying what works best for you every person is different but an agressive approach to what could be an agressive disease seems like a good idea to me.. Finally dont freak out!!! I lived finding pelvic examinations horrible because they splitted my skin for like three years but without flare ups white skin nothing it was just red, then I had a biopsy was told it was LSE and in two months after seeing pictures like crazy and freaking out my skin started getting purple and peeling off hahah I was amazed by the power of the mind, ladie you are early diagnosed trust me smile which is amazing so by the propper treatment things could be kept under control and from my point of view diet could do that for you too.

    Sorry for my spelling mistakes dont speak english very well, take care god bless you!

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