Recently Diagnosed with LS - Need Advice!

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Hello. I am 25 years old and today I was officially diagnosed with LS. About a month ago I was shaving and found a white patch. After googling that, LS popped up first and as I was reading about LS I realized I had more than one symptom. I noticed one of my labia seem to be gone while the other is smaller and my clitoris has gotten much smaller too. 

At my initial Dr. visit they said the white patch could be the beginning of LS but they weren't convinced and told me to stay off Google. However, I knew something wasn't right and kept pushing for answers. They finally agreed to do a biopsy to "ease my mind" and today came back my positive results. . . so I'm NOT going crazy. . . . well this diagnosis might make me crazy. 

My Dr. prescribed me a steroid cream to help with "flare Ups". But i'm more concerned with my labia missing and clitoris shrinking! The doctor just keeps telling me that she isn't worried because I'm still young and she thinks my vagina looks fine but she doesn't know what it looked like before because before this white patch I have never been to an OBGYN for anything other than a few miscarriages. 

I'm terrified that both labia will completely disappear along with my clitoris, Please help me, I don't know what to do and this has been keeping me awake at night for the last few weeks because even before I got diagnosed today, I knew this is what I had. 

I'm also unsure of what "flare -ups" consist of because i just recently found this white patch, it doesn't always itch and I don't have any discomfort throughout the days.  

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  • Posted

    Calm down. Do what your Dr. Says for now. If you are not happy with him/her see a specialist. OB or Derm.

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  • Posted

    Keep the cream on the white patch but sparingly. Have a doctor check it regularly as well. You need to keep on top of it. Sorry that you have this so young. It is not such a catastrophe for older ladies but I feel for young ones with this. 

    Use a moisturiser as well and depending where you are you can use one like Dermeze or one that does the same job. Only one suitable though not just any moisturiser! 

    Keep the area dry except for the cream and moisturiser. Once or twice a day it is okay to wet it but not continuously. 

    If it is any consolation it may reduce over time and your structure there may return. Don’t use soap. Wear cotton or nothing when at home. A dress at home or nightie is good.

    Wash undies separately and not with anything harsh, rinse thoroughly.

    Try not to worry. Keep researching as it is your right and doctors don’t have the time and should not be threatened by your doing so.

    All the best and hugs,

    Kathleen.

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  • Posted

    You are very young....LS is very hard to manage and affects you physically and emotionally. Dystrophy is the cause of the labia and clitoris shrinking, the clitoris is buried and fusing into your vagina. With time they might restore....not always though, or not fully. 

    Steroid cream works, you must complete the treatment and use bicarbonate of soda mixed into water, I put it into a spray bottle and rinse after every visit to the loo, also you should have a local bath for 10-15 min sitting in warm water with 2 tbsp of bicarbonate of soda. Stop using toilet paper, wear cotton pants, no tights either....

    LS flares up from time to time....so after the treatment with steroid cream you must use a barrier cream or ointment to keep the area moist at all times, not just the genital area but back passage as well because it spreads. You will continue to use steroid cream but only twice or three times a week....

    Cut the sugar from your diet, gluten free also...eat lots of vegetables and fruit, keep stress under control. Find ways to relax, meditate, do yoga....LS is an autoimmune disease.

    So, try to be positive, you are young and there is time and hope for things to restore back the way they were.

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  • Posted

    Hi, I am sorry you have to go through this.  I would consider getting a doctor who doesn't brush off your concerns.  You will need someone to work with you on this.  There are various approaches.  Usually the steroid creams are considered the standard and first treatment.  I struggled with those because it seemed to weaken my tissues.  I may have used too much or had too strong a dose.  I also had a treatment that consisted of injections of platelet rich plasma into the area.  I had infection from that as well (I believe I had sort of a pre-existing bacterial presence) but after the antibiotics took care of the infection I think the PRP helped the LS.  Then I had testosterone/ estrogen pellets put in my glute and it seemed to stop the progress of it (I'm postmenopausal).  I have heard on this site that some people have had reversal of the fusion with testosterone cream to the area. Don't be afraid to try some alternative things.  Especially with autoimmune disease, your Mind and spirit are powerful allies... be open to miracles.  This group is great.  Lots of support.  

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  • Posted

    Adding my two cents worth:  Check you diet - many of us are helped by cutting out added sugar, gluten, alcohol, to name a few.  As others suggest, try rinsing with either baking soda (three pinches in a Perin bottle) or borax after every bathroom visits.  Try using coconut oil for moisturizing.  Take baking soda or borax baths (1/3 cup)  These are my main things and with good result.   
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  • Posted

    Hi there. The first thing I'd do is get rid of your Dr ! Clueless obviously ! If you hadn't gone into google in the first place you would still be non the wiser as to having the condition. And you don't just use the steroid "for flare ups" it's an autoimmune disease and does just disappear but can be managed. I would Get a referral to a vulva specialist (1stchoice)gynaecologists or dermatologist asap . After your first visit to a specialist you should have at least annual visit to check on the condition. Look at your vulva with a mirror every week so you notice any changes. Some ladies take photos so they can compare and show to gynae is necessary. You should use the steroid every day for a month then every other for a month then twice a week for maintenance. THAT is the normal instruction for use. Don't just put it where the white patch is, also put it where you can see the fusing ie inner labia and clitoral area. It's important to rub the ointment in for 90 seconds. Use of a barrier is also important. I use HYDROMOL ointment. It will moisturiser and protect your skin against further damage. Sugar is to be avoided, have a look at anti inflammatory diet. Diet had a huge impact on LS as we on this forum have found out. do not use any soaps or intimate sprays in this area. I use Aveeno body wash which was recommend by my gynaecologists but you can just use lots of clean water for the area. Spray with water and Nissan after urinating to dilute urine which is an irritant to LS skin. Keep reading up on this forum but do not be overwhelmed by all the info. Just get the appointment with a specialist asap and do the basics as outlined for now, that will be enough for now. As you go along you can experiment other things of course but when first diagnosed it's all such a shock and upset that you don't want to be bombarded with hundreds of try this , that or the other re products. Good luck and please let us know how you get on. This is a great forum, so glad you found us . There is a long but fantastic webinar by a world expert on LS. Let me know when you are ready to hear it and I'll give you the details .

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  • Posted

    AMENDMENT TO MY REPLY

    . What I meant to say was ........ SPRAY AREA WITH WATER TO WHICH A COUPLE OF PINCHES OF BICARBONATE OF SODA HAD BEEN ADDED AFTER URINATING. WISH WE COULD EDIT OUR ENTRIES ON HERE !!! 😠

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  • Posted

    Hey

    I’m sorry you’ve joined our crummy club. I’m 28 and got diagnosed about 6 months ago. 

    I don’t have much good advice because I’m still figuring it out. I was prescribed clobetesal and I find for the most part that’s all I need. I haven’t really needed the other stuff suggested here like baking sofa and barrier cream etc. Though for some people it’s been a god send. 

    Definitely stop using perfumed soaps and body washes. And if you work out, change out of your sweaty clothes immediately. 

    For me a flare up usually consists of pain, discomfort, itching and sometimes a cut/tear. I’ve been fortunate to only get one every couple of months and they last a couple of days. I’m keeping track of my symptoms on a calendar so I can see how many good days I’ve had in comparison to the bad. 

    I’ve read that it’s good to stretch your labia and use dilators on your vaginal opening. I haven’t tried that yet but I think it would help. 

    Lots of lube during sex. 

    Best of luck! I was freaking out and devastated when first diagnosed but at least now you know and you can monitor it and learn to live with it. 

    Sending you good vibes and strength! 

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  • Posted

    I would like to thank all of you for the wonderful information you have provided me with. I feel ultimately alone in dealing with this but you all have given me hope that I will be okay. I'm so glad to have found this forum to ask questions because i didn't get much advise from my doctor other than "you're young and im not too c oncerned". I plan on finding a better educated doctor and trying some of the things listed by all of you. Thank you all again. I welcome any and all advice! Xoxo

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    • Posted

      Be brave....you will get better and certainly a better doctor who knows about LS would help greatly.
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  • Posted

    Hi Tank, you already have some good advice and so I'm just going to list what I think is important.

    Find a Vulva Clinic near you or if that is not possible find a specialist that is familiar with LS, sometimes that might be a gynecologist or dermatogloist..this is important because you are young and need to be seen by someone that knows what they are talking about!!

    The steroid cream is excellent at getting rid of the white plaques of skin and it is usually recommended at first to use twice a day for a week or two and then reduce to once a day and then alternate days and so on until they disappear.  Some women then use this perhaps once a week for maintenance, I never have as the jury is out on that one and so it's your personal decision.  Only use a tiny bit, the size of a pearl. 

    The fusing and disappearance of your labia minora is shocking to accept and it is one of the symptoms of LS.  Many of us on here have the same problem.  I'm not going to lie it may disappear more, everyone is different.  The way I look at it is that there are worst things..really!! Some women are born without their labia minora and they do just fine.

    One of the other symptoms of LS is that for some the vagina will start to reduce and get smaller and so it is important to buy some dilators.  This is rarely mentioned but it is important to enable you to continue to have sex with your partner.  I never did this and now I am too small for my partner.  I should say though that he is a big guy and I am probably an exception to the rule.  You can buy these dilators from Amazon.

    Use a lubricant like coconut oil/emu oil before bed as it is thought to prevent fusing.

    Cutting out sugars helps incredibly as for many of us we have found this to be true.

    Remember that you will go into periods of remission that may last for months or even years and that once you have become well informed you will feel less scared.

    We are here for you for any more questions.

     

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  • Posted

    I would get a second opinion from a Gynecologist....and learn what you need to do at this point...
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