Scared

Posted , 11 users are following.

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

ok, this is strange to talk about as I have only just turned 23 and am a mother.. For ages, I felt like something was wrong, I kept trying to talk to my doctor to tell them I fell like somethings off.. They kept shutting me down.. Finally I went back months later and I told them that I know something is wrong and I think I know what it is. I had them look again and they sent me to the hospital. It turns out that I have a bad case of LS and make me quit scared from it. Now I am terrified of all the possibilities. I have to see my doctor and hospital every six months to a year. I have about two people that know what is going on with me but as they don't have it, they don't really understand it and try not to talk about it. I just feel like I need to talk to people that know about it and don't try and brush it off when I feel like I need to speak. This is the first time that iv really gone into this, not even my parents or siblings know. Little scared to finally know others point on it that actually know what I'm talking about and understand the effects xx

6 likes, 18 replies

Report

18 Replies

Next
  • Posted

    Oh Honey, Don't be scared. This condition is not contagious. Just annoying and uncomfortable. Lots of women have it. No one really knows why. I'm a nurse. What would you like to know.
    Report
  • Posted

    You've come to the right place Nikkita.  I'm glad that you have been diagnosed early.  Many of us, me included, were diagnosed way later.  I believe that early treatment, properly done, is the best.  

    I hope that you've read through a lot of the postings here and have picked up on some good suggestions to take into account next to the standard issued Globetasol.  

    Open to questions and thoughts from you.

    Report
  • Posted

    I had major concerns when i was first diagnosed, I would only say, allow urself some time to let the diagnosis sink in. Google is a great thing, I panicked and googled everything too much n too Soon and it was hard to take it all in. Read a little each day, keep a note of questions n concerns.

    Am 2 yrs on, it's hard but it's not ruined my life - also I am no longer ashamed of it, my family and friends know about it and how my symptoms can impact me.

    This page is amazing for help and advice.

    Take it slowly to begin with x

    Report
  • Posted

    The diagnosis is scary and overwhelming at first. Then as you get symptoms under better control with steroid and other comfort measures, such as baking soda baths, and you hang around here awhile; you should feel better. please don't google pictures of it. I freaked myself out so badly with those pics! They are prob your worst case scenarios. I don't google any pictures of it anymore. And I'm careful how I google info too. Mayo clinic is good. This site is just amazing. I don't feel nearly as alone. So many caring people here.
    Report
  • Posted

    My husband and one friend are the only people I've told. The more you educate a few close people who would be your safety net the easier it will be to talk with them and they will be more willing to listen if the are knowledgeable. You don't have to hide or be ashamed. Invite them in. You need human contact and people here will offer moral support and advice.
    Report
  • Posted

    Hi Nikkita, I agree this is a puzzling disease, and I am surprised by this forum how many women have it.  I have only told one other person besides my husband and I shouldn't be ashamed as it isn't contagious!  Also, at my age I don't have to deal with sex anymore...that is a difficult situation for you young gals.  I use the Clobetasol.  Has your doctor prescribed that for you?  Also, try the baking soda for soakes and I use cornstarch to keep area dry.  Lots of good advice and support on this forum.  Take care.
    Report
    • Posted

      Great advice to use baking soda soaks. You may need to try different ointments or creams to find one that gives you relief.  The Clobetasol does not work for everyone. Because it is a steroid over time it can thin tissue in this area which makes it more sensitive. Just try the suggestions offered here and you will find what is right for you.
      Report
  • Posted

    Nikkita, I'm 64 and had LS undiagnosed till two years ago. It totally sucks, but you're lucky to be getting treatment. It's good that we go twice a year, because then there's no chance we'll get the squamous cell cancer you see if you google LS images (DON'T!). Freaking out about the diagnosis is common here, but the sooner you can get calm about it, the sooner the drug will be able to settle the LS down. It does take many months to really work, so that's why the other things we talk about here are important. Sugar is the devil – it works in the vicious cycle LS and yeast create. You can have some sugar, but those stress-eating binges on chocolate and desserts have to end. Just think of your urine as caustic and start rinsing after a pee and use a barrier like Vaseline to keep it off the next time. There's a lot you can do to settle LS down. And having high-friction intercourse while you're flared up will make it worse.
    Report
  • Posted

    Hi Nikkita, I was officially diagnosed in February and it really does your head in. I too see my doctor every 6 months. My GP caused me to wait two years before getting diagnosed. Honestly, I'm still freaked out but I think this is positive because it motivates me to look after it. Taking control of the situation and managing the symptoms are a 'must'. The idea is to get yourself into remission. I am 47 and no longer interested in having more children but that may be something that is troubling you. If so, I don't think having LS is a reason not to have more children. Like the others have said it is not contagious and I believe I recently read about another woman on this forum who had a child after LS. Plus your doctor might be willing to perform a c-section for you. You will get to learn what helps you and what doesn't. The initial shock wears off. You are not less feminine. You can find ways to manage this. People live with this for years and years. Hang in there, you can cope.
    Report
    • Posted

      I had two babies naturally in my thirties, having had LS (untreated) at least since I was 22. The episiotomies certainly seem to be harped on by my LS to this day, but I still had a long remission and plenty of great (not painful!) sex in my forties. I never wish I had had C-sections. Any surgery means possibly suffering the Koebner effect (skin trauma triggers flare-up, not necessarily locally).
      Report
  • Posted

    Wow, I'm an shocked to see how many people have the same thing as I have. My doctor told me that is was rare, but even more rare to have it so young so I'm happy to know that it's not just me. (Obviously not that you all have it, but to know that I'm not alone). I'm not sure if I will have children in the future but I was wondering if it was still a possibility as I would always like the option to be there as I am still young. It was very hard going without it diagnosed as I was really struggling to go anything with my daughter (she's 4 so always up for playing) I would dread going in the car or anywhere really as I wouldn't stand for too long without it hurting. Even sleeping, I would be up all night because it hurt so bad. I was given Dermovate Ointment from my gp after he finally told me that I was right about what I had. I had to go to the hospital 3 week later and the cream had really helped close up the the tares that had gotten so deep, I didn't think it would ever close. I have a another appointment with my gp on the 10th as I only got diagnosed by him just over a month ago so this will be my 3rd appointment as they need To check that it's all going as it should with nothing out of the ordinary. I then have an appointment in March with the hospital because they said that they need to check that i haven't developed the cancer which I am told is what they need to check now litterally for the rest of my life.. That is the main thing that I am so worried about, that it is more of a possibility now. . When I sat down and spoke to my partner about it, he kind of shrugged it off and told me that he don't want to talk to me about it, it seemed like he really distanced himself from me since I told him, now he isn't so distant as does actually go near me now but I do feel a bit of a distance with I'm is I ever mention that I have an appointment or anything like that. Luckily I have my cousin that went with me to the hospital and will be going with me again in March. I will try that thing with the bath but I just need to figure out where to get it from as I didn't know you could do that. And as for the blocker for when I use the toilet, that's brilliant!. Thank you all so much, this is really helping knowing that I have people to really talk to and have the support xx
    Report
    • Posted

      Yup, my husband doesn't want to talk about it either. I find it hurtful and it makes me feel more isolated.

      I don't know if ĹS is more prevalent due to the number of people who are responding on this forum. For me, I finally have somewhere to find out about others and gain advice and support. It also helps me gauge the severity of my own case. I don't have that anywhere else so I want to remain an active member so that they don't shut it down due to lack of participation.

      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