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long time suffer of LS

Posted , 7 users are following.

christine94142
christine94142

hi everyone, i have just found your forum i was born southampton. but now live in australia i have suffered for over years with various trial of different  treatment ments and are for awhile then i have relapse. i am at the stage of giving up my husband is a saint he is patient and loving even though are sex life is non exitant. i am on antideressants to help me  deal with things. theres not a minute of the day i am not thinking about my LS and how nice it would be to make love to my husband again without pain. i cant talk to anyone about it . my mother passed away.i cry alot at night when my husband sleeps. i am only 55 yrs old.and life sucks

0 likes, 20 replies

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  • bennetta
    bennetta christine94142

    Posted

    Hi! This breaks my heart to read. I've only been diagnosed for a few months and my sex life has been horrible. We have abstained so we didn't irritate anything further but my husband is in the military (US) and our time together is limited already. So far the treatment (steroid snd elidel combination) have been helping things improve. I'm just curious for after I get it under control/gone and then what. Like you, I constantly think about this. It scares me mostlu, the lack of knowledge and lack of medical professionals with experience. It stresses me out daily and at this point I'm trying to figure out how to balance that stress. I will say I am grateful for this group and while we seem to be so far from one another its nice to know we aren't alone. I'm 27 and terrifie what this all means for me and the rest of my life.
    • christine94142
      christine94142 bennetta

      Posted

      YES I AM ALSO CONCERN ABOUT THE LACK OF KNOWLEDGE OF THE CONDITION  MY DERMATOLIGIST SAID IT IS MORE COMMON THAN WE THINK IAM SORRY YOU GOT YOURS SO YOUNG AS MOST OF THE DOZENS OF SPECIALISTS I HAVE BEEN TO HAVE SAID IT OCCURS IN POST MENAPAUSE. MY HUSBAND IS VERY SUPPORTIVE BUT HAVE FELT GUILTY FOR ALONG TIME AS WE WERE ONLY TOGETHER A COUPLE OF YEARS WHEN IT HIT . BUT WE STILL MARRIED 5 YEARS AGO BECAUSE HE ASKED ME AND I LOVE HIM DEARLY. I FEEL SO ALONE SOMETIMES IF IT WERENT FOR HIM AND MY SON AND DAUGHTER WELL I FEEL NOTHING ELSE TO LIVE FOR. 
  • athena93317
    athena93317 christine94142

    Posted

    I'm so sorry to hear you are so down I want to suggest a book by Dr.Joe Dispenza Breaking the habits of being yourself

    It has helped me be more positive and view everything differently it is hard not to gave anyone to talk to I understand my husband didn't like to talk about it he likes to pretend everything is fine he doesn't like when something is happening he can't fix so that has been tuff lucky I'm not a shy or embarrassed person so I tell people at work and anyone who wants to know about it I want as many people to know as possible I think it's sad we have such little support when there is so many women affected but I hope things get better remember you are beautiful

    • christine94142
      christine94142 athena93317

      Posted

      thanks i have ordered the book that you sugested acouple weeks to get it i now know i am not alone thank god will keep in touch
    • athena93317
      athena93317 christine94142

      Posted

      Good I hope it helps it's hard but with the right mind set we can get threw anything and have an amazing life you deserve happiness
  • justine89448
    justine89448 christine94142

    Posted

    Hi I'm sorry you are feeling this way. LS is tough when it comes down to sex. I'm 45 and having the same issues I have sex at the weekends and spend the rest of the week having problems like you I want to have an intimate relationship with my husband still. I don't know what to do either just want you to know you are not alone xx
    • christine94142
      christine94142 justine89448

      Posted

      thanks for replying i had had no sex for 6months i have the iching under control but the skin is so sore after it is stretched i cant bear it and my husband wont touch me now cos he doest want me in pain
  • hanny32508
    hanny32508 christine94142

    Posted

    I hope you will read all the various posts in this forum.  There is a lot of info that may be of help to you. And if you are a bit like many of us - we find support with each other, we truly do.  

    LS is not an easy problem to live with and it affects not only you but also your partner.  I myself went through a period of depression too.  Not beeing able to have intimate contact with your partner wears heavy on mind and soul.  And there is that insecure feeling - will I keep my partner?  My husband and I had some serious talks at the time.  

    In contrast - after all fused up and I had to have a dilation procedure done at the hospital, I can now say that I'm practically fusion free.  And that may mainly be contributed to the baking soda treatment I gave myself in combination with coconut oil for moisturizing.  I still continue with the dilating as well. On top of that all, I follow an alkaline diet:  No gluten, no dairy, little meat, no sugar, no alcohol, no caffeine.  I have been very diligent with this all.  And just recently my husband and I could be intimate again, though in a very gentle fashion.  It took from October last year, when I was totally fused up and needed this special procedure, till January this new year.  (To give you some kind of a time frame.)  

    Patience does it, no doubt.  Persistance, diligence.  And a very supportive and encouraging husband.  Not to forget the people on this site.  Without them, I wouldn't be where I am today.

    So, hang in girl.  There is hope, really.  

     

    I hope that the above will give you some hope.   

     

    • christine94142
      christine94142 hanny32508

      Posted

      thanks yes i am reading all my replys because someone my have the answers we need. i have the itching under control with a drug called methotrexate 20mg per week and a steroide cream and now i am using a baby rash cream to put moisture back into skin and vagifem. i have had Ls for going on 15 years i have had 2 fenton ops.

      i also have Ls on my back which is ok it doesnt bother me . but i was told it was unusual to have in in 2 places. although my back Ls did not appear until a couple of years ago. iam 55 and cant have sex at all. so just having found this web page has made a huge difference. thank you

  • sarah33278
    sarah33278 christine94142

    Posted

    Know how you feel Christine.  I am also in Australia, are you seeing a skin specialist, vulvadynia clinic or gyno?  My husband is a saint also and loving but yeah not able to have intercourse is extremely difficult for partners to accept.  I am 52 so not far behind you.  I am told that there are clinics that can help you with painful intercourse, LS is NOT contagious, you cannot pass it on to your partner.  There are also anaesetic creams you can also use for pain the only problem with them is that once the pain is numbed, you would not know if you have teared until afterwards.

    There are also dilators to stretch internally gently, may I suggest that you go to a Womens Sexual Health Centre, Vulva or Vulvadynia Clinic or Sexual Therapist that may be able to give you the help that you need.  Many LS sufferers still continue to have intercourse and manage the symptoms quite effectively.

    • christine94142
      christine94142 sarah33278

      Posted

      i am seeing a gyno and skin specialist he has me on 20mg methotrexate and a steroide cream and vagifem. i will look into the places you suggested thanks
  • sarah33278
    sarah33278 christine94142

    Posted

    Here is a site for anyone interested in Dilators -

    I hate to be cruel but aren't we more important than our partner's sexual desires?  I have been with my husband for 25 years, he knows the situation that at the moment sexual intercourse is off limits.  My view is if he is happy to stay around he will, if not than I believe it was not meant to be.  Although devastating if he left we cannot physically please them all the time.  

    I am open with my husband and LS and I am open to him seeing a prostitute to seek sexual pleasure to him as long as there is no return of him to her and that I am in the room with him and that I choose the girl.  Alternative to the prostitute thing I have also suggested to him sexual massage as an option at a more higher class venue where no sexual intercourse takes place.  I know all this sounds too much and extreme but in desparate times you need desparate solutions and its far better option than partners going off and having affairs of which you know nothing about.  Apologies if some of you find these alternatives alarming, but sometimes you have to leave open other ideas that may help the relationship.  Currently he is not interested but he is happy to know that the option is there and that I would go with him with an accepting attitude.

    Emis Moderator comment: I have removed the link as it was to a site unsuitable for inclusion in the forums and wasn't working when checked. If users want this information please use the Private Message service to request the details.

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • Guppy007
      Guppy007 sarah33278

      Posted

      I think your smart!!  this post will not be acceptable though for some, and I get that, but good for you for thinking ahead...I have not had sex with my partner for over a year, and it has had nothing to do with Lichen Schlerous, its too long and personal to go into here, but over the last few weeks reading about the problems woman are having I have decided that I must go ahead and see if I can actually have sex, I must admit to feeling worried.
    • hanny32508
      hanny32508 sarah33278

      Posted

      Sarah, this opens up a whole new discussion - intimacy.  To me it is an important aspect of a relationship, involving both partners.  We both experienced a form of intense loneliness, when LS separated us.  

      The continuous dilating procedure serves to keep the layers separate, and to improve the position of the blatter as well.  An added bonus is when it leads to a new form of being intimate with your partner.  

    • sarah33278
      sarah33278 Guppy007

      Posted

      Hi Guppy007

      Thanks for your reply, suggested alternatives will not be acceptable to many, its abit of a grey area.  I'm probably heading towards a year also, I don't think we're the only ones.  I am too concerned and its too painful, I have been referred to a Womens Sexual Health Clinic where they can perhaps address all these issues.  

    • sarah33278
      sarah33278 hanny32508

      Posted

      Hi Hanny,

      Thanks for your reply.  It does open up a new discussion sorry about that, mind working overtime again.

      It is a very important aspect in a relationship and I think by me opening up alternative suggestions may help others to perhaps feel a little bit more ease and know that there are other women out there in the same situation going through the same sort of stuff and worrying about their partner and intimacy.  My alternative or options aren't for everyone, I am in my early 50s so I guess that I am not that shy in talking about it and that I have been in my relationship for a very long time.

      The Dilator is a good option which to my mind opens up other discussions but perhaps I'll leave that one go until I find out more information.  Thanks for replying.

    • hanny32508
      hanny32508 sarah33278

      Posted

      Don't feel sorry for bringing up the topic of intimacy.  It is good you did this.  And I think there is a lot to discuss around this topic when confronted with LS.  We're trying to support each other and that includes this part as well. 

      We again can learn from how other people have come to solve this strangely unique complication that comes with LS.    

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