57 African American Female who made have lichen sclerosis.

Posted , 10 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

I replied to a post that was 3 years old. I have an appointment with a gynecologist, next week. Been celibate for almost 4 years and have been dealing with uncontrolled high blood pressure, congestive heart failure and severe sleep apnea. I have worked so heart to get these conditions at a manageable level and now this!! I'm afraid to go to the doctor and even more afraid not too. Anybody, out there. Please help.

0 likes, 21 replies

Report

21 Replies

Next
  • Posted

    Don't know whether I'm understanding correctly: You know already that you have LS, or you are going to see your gyno to see if you have indeed LS? 

    ?There is lots of good info on this site - check for instance the discussion on Borax. 

    ?Many of us are following a certain diet - for instance, sugar is a trigger for many.  I myself am careful to not consume any added sugar, no gluten, no alcohol, no caffeine and limited dairy.  It makes the load lighter. 

    ?Hope this gets you on your way.

    Report
    • Posted

      Hello, I have a upcoming appointment on Nov 1, 2017. I suspect that I have it, because I have thhe exact same symptoms as another young lady on this site. I can't believe that my genital area went through this kind of transformation and I didn't even know it!! Had I been sexually active, maybe I would have discovered a lot sooner.

      Report
    • Posted

      Don't blame self in any way Angela. It is just that LS is so little known among people.  Society teaches to have regular breast examination, but never talks about regular examining of your vulva area.  

      Report
  • Posted

    Angela please don’t loose heart 🙏🏻?? 

    LS   IS  manageable 🤗

    have you seen a doctor who suspects LS and has referred you to a gynaecologist?  

    If so she/he may do a little biopsy to confirm whether it is LS   Once you have that diagnosis you will be able with their advice to start the treatment which is best for you.  

    I totally agree with Hanny who I think we are following a pretty similar diet.  (Except I drink a 🍷or two of wine at weekends 🙊 )

    Angela you will be fine once you know what you dealing with X

    Report
    • Posted

      Hi, going on Nov 1, 2017. Thanks for sharing what I should expect. I will share this. I think that I had mentioned that I was celibate for quite some time. After seeing what my genital look like, I feel as if I will be for the rest of my life. I guess there are worse thing in life than no sex. Prior to this, I had started to want to date and possibly work towards a relationship, but not anymore.😔But first things, first. I need to know exactly what I am dealing with.

      Report
    • Posted

      Angela 

      You no worry about no dating or no sex  

      Realistically when you meet someone you get to know each other    Take a little time 

      You are a strong woman Angela Already overcoming difficult conditions and managing them?

      Please don’t negate your plans for sharing and building towards your future. 

      It is good you seeing gynaecologist soon then you know exactly what initial treatment can be prescribed for you 

      LS does not always prevent sex. with the right lubricants and moisturiser   It depends on how it presents its ugly 👹 self 

      You will feel a lot more in control after your appointment 🙏🏻

      Love X

      Report
  • Posted

    Sorry to hear all your health problems. I think it is important to keep in mind that you CAN get help with LS and your doctor can do this. There a treatments that will help you such as creams to really help with the soreness and pain. Hope your appointment goes well.
    Report
  • Posted

    Angela,

    sorry to hear about your medical problems. Yes, LS can be scary but with the right doc and his/her help you can start on the right treatment. Once you do that and you see and feel the difference that soreness and pain is subsiding you will see that there is life with LS. As far as future realationships you should not give up hope. I think this site is wonderful. It helps to see that you are not alone with this disease. There is a lot of information on this site and it has been very helpful to me. You seem like a strong person with all the medical issu es you are dealing with. Have the biopsy and once you know for sure you will be able to start treatment. I agree with Sedg, once you know for sure what you are dealing with you will be fine.

    Report
    • Posted

      Thank you. You all have made me feel a little less stressed. Again, I am so glad I found this forum. Your replies give me hope.
      Report
  • Posted

    I don't know if I should tell you that I have had LS for 30 years!!! But I am telling you because for 30 years I haven't spoken about it to anyone else but my husband and all my gynie prescribed was a steroid cream which I have used continually for 30 years.............. I don't know how many times a week! I can't begin to tell you how thin my skin is and how much I have been suffering. BUT here is the good news!! Since finding this forum about 6 weeks ago my life is all the better for it. I am now using a mixture of 4 tablespoons of Organic Castor Oil, 2 DROPS Lavender Essence oil and 1 DROP of Lemon Grass oil and the itching has completely GONE... gone, gone. It is like a miracle. I have also bought some Borax which I have started to put in my bath water but I am going to buy a spray bottle and mix 1/8 tsp of Borax into 1 litre of warm water and use that instead as it is much cheaper. A LOT of ladies have been assisted by using Borax. I am now using the steroid cream once a week as I I have found over the past 6 weeks, for the first time, that I am now "fusing". This hasn't happened to me before and I think it is because I stopped the steroid cream completely about a year ago. I used Desitin baby cream instead which was OK but not as effective as the steroid cream. If you try the Organic Castor oil mixture it is VITALLY important that you don't exceed the DROPS and use a small dropper. Some ladies have complained that it burns and I think that can only be from exceeding the drops and perhaps using a bigger dropper than I have used. I use a dropper from a nasal decongestant bottle. 

    Good luck and please try different remedies on this forum to find something that will suit you......... I am sure you will find something. I have tried various "diets" over the years (tried the no sugar for 2 years), cutting things out, and nothing has made any difference to me. Maybe spices, wine and tomatoes........... the jury is still out on these

    ingredients! smile

    Jan

    Report
    • Posted

      Jan, Thank you so much sharing your story and providing an alternative to dealing with the itching. Since everyone had been so kind, I will post the results of my doctor's appointment.

      Report
    • Posted

      Angela good luck with your appointment tomorrow 😘

      I hope your consultant is nice and able to put your mind at rest regarding future and set you on a good treatment path. 

      This Army of LS Women are waiting to hear outcome so you have us for support and you will be in good hands 👯???👯???👯???👯???👯???👯???👯???👯???👯???👯???👯???👯???👯???👯???👯???👯???

      We all with you Angela 

      Love n Peace 💖X

      Report
  • Posted

    Hello everyone. I went to see my new gyno on 11/01/17. I was super nervous about our discussion, but she tried to put me at ease. After my exam, she said it could be one of two things; Vitiligo or LS. She said my genital area looked normal despite the fact of change in color. She did perform a biopsy because she said that would enable her to give a more accurate diagnosis. I'm still recovering from that cut. Also tested to see if the itching may be a result of a yeast infection. I won't know the results of the biopsy for 1-2 weeks. I am trying to focus on other things while I wait, though the itching is a bit of a reminder. After reading your stories, I realize that whatever happens, I should be thankful that whatever I have, is happening at 57 (almost 58), instead of many years ago. Some of you have been dealing with this for a long time and for that I am truly sorry, but also grateful that you shared your stories and offered me comfort, after my first post. God Bless.

    Report
    • Posted

      Please let us know how things go for you. I am interested to hear if yeast is affecting you.

      Jan

      Report
    • Posted

      Hi Jan,

      I just recently posted this in response to another ladies injury. I don't have a yeast infection. I wish it was that easy. I have L.S.. I am so grateful that the biopsy was negative for cancer, but I spent most of the afternoon, crying because I felt like I was "losing" something with having the L.S. I was prescribed the Clobetasol, once at night for 4 weeks, twice a week for 4 weeks, then twice a week thereafter. My pharmacist had never heard of Lichen sclerosis. Told Toni, that right now, I am so upset. I cried most of the afternoon. I know that there are worse things in life, but I need a moment to grieve, for what I believe is the loss of my genitalia. I'm still glad I found this forum. I just need a moment to get used to whatever my new "normal" will be.

      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up