Just returned from hospital, been diagnosed with LS. I'm 32 yrs old

Posted , 12 users are following.

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

Hi all, after years of suffering with sores, itchiness and bleeding from scratching so much I have just returned form hospital with bi op results that I do have LS. I am relieved to now know what I have but after reading lots on internet I'm worried as it seems I am quite young to have this terrible and soul destroying disease. I have been applying dermovate for 3 months and things have calmed down a lot. Although I just always seem to be waiting for the next flare up. I had a little girl 18 months ago, natural birth. Although I say natural, it was 28 hour labour and I had to be cut very bad. This is when things got a lot worse for me as it just hasn't seemed to heal down there since then. If I had been diagnosed with LS before giving birth there is no way I would of had natural birth! Just upset that I didn't get diagnosed years ago instead of being told I had thrush time and time again.

Sex is out the question although I'm lucky enough to have a very understanding husband.

Thank you for reading, Laura x

0 likes, 27 replies

Report

27 Replies

Next
  • Posted

    Laura, I am so sorry that you have this awful disease so young. Hopefully, it will settle down with treatment and you can resume relations with your husband as you are so young and just starting your family. I am nearly70 and have had this for about 15 years or so. The cream should give you some relief. I also use Dermeze between using advantan fatty ointment. The Dermeze  is like a Vaseline and keeps it moisturised. I guess you know not to use soaps and wear cotton panties that are not tight. Anyway, all the best and do not let it get you down. You have a lovely little girl to keep your mind off it a bit.
    Report
  • Posted

    Laura, I share your puzzlement about not being diagnosed earlier.  Apparently many Dr's have never heard of LS.  I went to my family physician last year and was in the middle of a bad flare.  I got the original diagnoses from my gyno, but didn't want to pay the extra so just went to my primary.  Well, the nurse practitioner had never heard of LS and was quite intrigued.  The good thing is that when I ask for a refill on my clobetosol there is no argument!   

    I also have noticed that my worst spot is around a scar I got when I gave birth to my second child.  That was 43 years ago!!  

    All the best, Laura.  Hope you get your LS under control and have many symptom free days.

     

    Report
  • Posted

    I hear you, Laura! I have had LS all my 62 years, undiagnosed till last summer. I had a big episiotomy at age 30 and that's exactly the line along which my skin tears when it gets white there.

    I have a theory, based on my gynae's admission that LS and psoriasis are related. In psoriasis there's a triggering of flares by skin trauma called the Koebner phenomenon.

    Anyway, on an optimistic note, I had a second child and lots of great sex in my forties and some in recent years. So, don't despair. If you read the hugely helpful advice shared by sufferers on this site, you should have many years of calm times between flares.

    I do know the friction of sex is very bad for an active flare, so we all need understandng partners. In my case it stirs up candida and I end up with a hard-to-cure yeast infection. You want to avoid scarring, which will lead to atrophy. So do be good to your vulva. redface

    Report
    • Posted

      Thank you all for your replies, really helpful, nice to know I'm not alone! Moreell1951 how was your second birth if you don't mind me asking? If I can reassume a normal sex life again we would love to give Italia a brother or sister! Although after having a  terrible experience first time round and still suffering now I'm considering a c section. 

      So nice to hear feedback from you all.

      laura x

      Report
  • Posted

    Laura, my second and third births were nothing like the first one. I had my children many years ago, of course, but wanted to reassure you that each birth is different, and your next one should be nothing like your first which seemed very difficult for you.   My daughter had c sections and they are not fun either. At least you recover quickly the second time from a natural birth. Hope you are doing better all round.
    Report
  • Posted

    Hi Laura,

    Both my births were induced and natural. I honestly don't remember having an episiotomy in the second one. My marriage was so bad we only had sex once in the three and a half years between them. I remember that my clitoris hood was starting to fuse two years after the second one, but resuming sex seemed to un-fuse it, at least for a decade. It fused suddeny around the time my periods stopped at age fifty, then un-fused again when I became sexually active at age 57. At 62 it blew up in a boil and fused heavily and now I've given up on sex.

    Report
    • Posted

      Hi i was told about 6months ago that i had this been to see the Doctor today for a follow up when i asked her if it was possible that i may un-fuze at some time and she looked at me like i was an idiot to even think it was possible i am so confused
      Report
    • Posted

      When you Google articles about LS, generally surgery is not an option for women. Some men with a mild case of fusing can be essentially circumsized and it never grows back. Our vulva re-scars quickly after urgery, so other than this new stem cell treatment there's only the creams. As I understand it surgery is necessary on cases of total closing (where you can't even pee). Sucks to be us.

      I now wonder at a young female GP I saw when I was 19 and asking for the Pill. She said something I thought was really odd that I've wondered about for forty-three years. She said my vulva was "clean". I suspect it was shiny and already atrophied, but she didn't know what that meant. My porn-obsessed husband a few years later wanted to take photos of it because it was 'small and pretty'. I remember going to a combo rock show and striptease and noticing that the strippers' vulva had three dimensional architecture.

      Report
  • Posted

    Hi Laura,  So sorry that you have joined this club.  Just a bit of info that might help you.  I had a ceasarian for my daughter yet I still tear on my perineum.  It is the most common point for Ls to cause tearing.  Having a baby normally would probably not have made much difference although I don't suppose it helped.

    Glad you have a lovely husband.  I do too.  I have had this since a young girl.  we managed to have a sex life until only a few years ago (I am 58 now) At times we had to abstain but I would get things calmed down and then we could have some action.  It is not that easy but worth the trouble.  Plenty of lubrication before during and after.  The reason we stopped was due to diabetes not the LS and my husband's problems.  Since we stopped though things have closed a lot so I would recommend that you carry on trying to keep things working.  Use it or lose it as the saying goes.  Good luck.

    Report
  • Posted

    Dear Laura

    Please please don't go for a 'c' section for reasons I will explain in the interest of your next child.

    I am sure you will be able to cure yourself. There is a woman in one of these discussions who has cured herself, using a herbal root....check through for this info by clicking all the LS commentaries til you find it... and I know someone else who has done so also she has written a book and its soon to be published. I'm following the principles and will be taking the botanicals recommended.

    BUT preparation is the key. Firstly detoxing and getting your thyroid under control. TSH should be 1.5 or lower. The reason your GP and even Consultants refer to higher figures is because the 'normal' range is skewed. Ther are so many people about with hypothyroidism (low thyroid production...for various reasons. Visit the _____ as a resource). Also check out the throid sessions sean croxton 'underground wellness' on at the moment ....webinar. Got to go go will come back to you.

    Love Marey XXXXXXXXXXXXXXX

    Back later

    Patient Moderator Comment: I have removed an URL (a link) from this reply as it is not suitable for inclusion within these forums. Refrain from posting this information. If any user is interested in this removed information then please contact the author via the Private Messaging system. Thank you.

    Report
  • Posted

    Hi there Laura,

    So sorry to hear your story and honestly Laura it is so similar to mine in so many ways except for the understanding partner which I unfortunately did not have. After the the birth of my first and only child my son, I too ,tore or ripped and they had to cut me and if I'm honest after nearly 24 years I've never really healed..and like you I was always fobbed of with canesten cream ..constantly...its only when I plucked up the courage to go for a smear test that I was putting off for soooo long due to pain..fortunately the nurse was so gentle and understanding...she referred me to a gyno so three weeks ago thanks to that luvly nurse and the gyno seeing me for it seemed like one minuet and instantly diagnosing me then and there all be it I do still have to go for biop in the next few weeks ....but all those painful years of not knowing what was wrong with me...Well let's hope Laura the luvly people on here will keep us both right...as I'm now menapausal and suffer from fibro-myalgia.......

    So take care Laura and your beautiful little Italia , g.b.u. xxx

    Report
    • Posted

      Wow, Angel, that's almost exactly my story, too. Too many late diagnoses! But we're in good hands now, including each other's.
      Report
  • Posted

    Hi Ladies,

    I am 33 and have had 2 children.  I was diagnosed just last year after seeing drs and naturopaths who guessed that my vulva was shrinking due to low estrogen, caused by nursing my babies for almost 5 years straight.  I tore with my first delivery to the sides....just a little (DS had the biggest head the midwife has ever seen, yay) and the LS started around those tears.  Along with the genital itchiness, pain, scarring, and chages to the shape of the vulva/clitoris hood, I have extragenital LS as well.  Good news is that since I have it all over my chest and back I am able to begin UVA treatment, which I start tomorrow.  I'll post back sometime if it works.  

    I am trying the paleo diet and have found that I have flare ups when I eat chocolate, especially cheap chocolate.  I haven't been too consistent so I certainly have to consider if it's more important to taste chocolate or have any kind of sex life with my husband and be comfortable in my body.  

    I would have loved to have another baby.  I read somewhere that LS seems to clear up during pregnancy.  Second and subsequent deliveries are mush easier and I'm sure you could you a dilator to ready your outer vag for the process of delivery.

    Here's hoping there's some cure in the works.  I'm expecially hoping the UVA therapy works and doesn't destroy my skin.

    Report
    • Posted

      Good Luck with the UV treatment. Is that the warm red one? Or is it infa red I'm thinking of? Heard that that together with saunas and any kind of de-toxing and nutrient-dense food (first) is helpful.

      How are you getting on with Paleo? I'm following it too.

      I think its wonderful that you nursed your children for so long. I did too but that was years ago. LS is a recent thing for me. Arose from stress I believe.

      Love Marey x

      Report
    • Posted

      I have started UVA therapy which is at the hospital's skin care clinic.  It's a really expensive machine, +$100,000 & is the first & maybe only in canada. I tried UVB at the same clinic & burned.  The studies suggest that UVA works better.  I have LS on my chest & back too.

      I'm playing around with the paleo protocol. I absolutely love paleo but am feeling very limited on the AI.  I'll stick with it because LS is so uncomfortable & I want my life back more than I want eggs, dairy, chocolate, sugar or grains.  

      I think my LS started from stress too.  I was breastfeeding my second & he was reacting to something in my milk -likely eggs, milk.  It was really rough & eventually, with lots of tests, we figured it out.  He also took a few trips to the hospital in that time.

      Anyways, I'm 2 days in to the UVA treatment & so far so good.

      Report
    • Posted

      great bearmama, glad good so far.

      gosh you must suffer with it but brill you're following AIP and have the motivation. do you have any good recipes? i know there's books out there but i'm trying to get comms going here for mutual help...so i just opened a thread should you wish to contribute your expertise gathered so far. It starts with a call to juicing...but veg mostly and minimising fruit...so not a sweet thing. would be great to get feedback on the AIP. did you hear about that from the paleo mom ? she's pretty good.

      so sorry to hear about your baby son's reaction but you really seem to have a handle on it. what was he reacting to? do you think some GMO stuff might have got into your diet at that time? 

      good luck with your course of treatment

      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