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is there anyone in sussex with LS

Posted , 8 users are following.

Guest
Guest

I am recently diagnosed with LS and do not know anyone else with it, is there anyone in or around sussex (UK) with it?

0 likes, 18 replies

18 Replies

  • HollyPH
    HollyPH Guest

    Posted

    Not from your area, but I was diagnosed in 2012 and discovered my friend since childhood had been diagnosed a few months earlier. We'd grown up together only 4 doors apart. She didn't tell me and it was only when I told her that she confided in me. You really don't know who has it until you talk, which I appreciate is difficult. I am sad my friend has it but it is lovely not feeling alone with it. Best of luck finding someone who really understands that you can talk to. And good luck managing the condition. X
    • Guest
      Guest HollyPH

      Posted

      thanks holly, it is difficult telling people, my family know and try to understand but i suppose once i get over the denial of this then hopefully i will be a bit more confident in telling people. thank you for sharing your experience and it goes to show you never know what other people are living with. x
    • suedm
      suedm Guest

      Posted

      Hi Debbie it is difficult to tell people, you can say that you have a rare condition, an auto immune condition that no one seems to have heard of

      (this isnt really totally true as this site demonstrates, but it does make people sit up and listen, when everything that one reads says it is  rare) 

      I use the term The Itch on my Undercarriage, then I say it was treated wrongly for thrush and it was only when I looked I saw there was a change in the structure that didnt seem to be right. 

      You could ask at your surgery if you could be put in touch with someone else in their practice - or ask at the clinic you attend - that has the same conditon- offer to give your (mobile) telephone number to be contactedable. Mutual support in invalueable

      Sue

  • kelly86460
    kelly86460 Guest

    Posted

    HI, I'm from Surrey, not Sussex but not far away! I think there are lots of people diagnosed or not that have LS but would not tell anyone. Its like a 'dirty secret' I suppose. It shouldn't be of course but I've not told many people and those I have are surprised and have never heard of LS. This is my first post, but been following for over a year now. Its a real help to know there are others living with this condition. When I last saw my gynee, she said that LS was a very common problem and that she sees at least two people per clinic. Good luck Debbie, if I can help yo, let me know x

     

    • Guest
      Guest kelly86460

      Posted

      Hi, thank you for your reply!! now i am reading more about it i am realising that it doesnt matter i dont know anybody with it just need to come to terms with it, i think ive been in denial a bit!! x x

  • carolina80209
    carolina80209 Guest

    Posted

    Hi Debbie!

    I have read soo much information about LS on the internet (I am not working at the moment) I dont know about UK, but in general I used to believe it depended on the severity of the LS, when is very severe I have read of women been successfull, as in having been able to have sex, after having surgery and working with a sexologist. And in less severe cases to have been able to manage it with steroids and dilators to have sex and so that fusing wont occur. And in this success cases the most important thing is that these women had been working with specialists on the disease. I know that many women suffer despite of using steroids and some had even had unsuccessful surgey ( it is very important to do both of this things with the right doctor) I dont know if you are early diagnosed young or older, I was recently diagnosed, I am 26 and I live in Ecuador, so I am taking this problem by the horns and seen Andrew Goldstein on Washington in a couple of weeks. I can tell you this, first of all there are successful cases when it comes to LS (if you believe you cant be then you wont be) and how many times have we heard of incurable diseases and people that have cured by themselves pretty much.. I encourage you to practice meditation and deeksha to understand how supressed issues can damage your body..feel healthy, believe it and ask for more health and that will happen.

    I am sorry for my English :S haha. I hope you can find this information useful.

    Take care!!

    • Guest
      Guest carolina80209

      Posted

      Hi, I am recently diagnosed and 36, and realising i am probably not coping with the diagnosis. I have just said to a reply earlier, i thought knowing someone with it to talk about it would help but actually i need to come to terms with it and i like what you said about suppressing issues as i am very good at that as it inevitably comes back to haunt you!! My husband is understanding but actually stesses me out an awful lot with everything else. I work full time as a nurse and have 2 small children and seem to look after everybody else except me!!

      when i first wrote on this site a few days ago it was like i was admitting i had a problem like at an AA group and i was in tears!!

      So now need to grab this thing and deal with it and be well!!

      Thank you so much for your words they have gone a long way!!!

    • suedm
      suedm Guest

      Posted

      Another thought Debbie You may have missed threads suggesting Dr goldsteins webinar- the details are on the home page  New to LS - it takes an hour so you need some time to watch - have a note pad by you - I took screen shots of the slides as a nurse you willhave a good understanding of some of the technical terminology - Knowledge is power, and one aspect of the condition we all seem to agree on that the  way we react to stressful conditions will affect the LS - so it is a good idea to find a good stress management tool that works for you

      Good luck 

  • justine89448
    justine89448 Guest

    Posted

    I think it's normal to be in denial because we feel helpless as its a desease that's not curable only sometimes manageable. And the details of it aren't nice so telling people can create a lot of bad body language from the the person you'd confiding in which makes us feel bad. And on top of that they don't know what to say so I think acceptance is the 1st step and then you will feel more confident to deal with the situation. I know it's tough but we must stay positive x
    • kathy46259
      kathy46259 justine89448

      Posted

      Hi Everybody:

      I have to keep a sense of humor.  My LS flared up so using cream, I use Premarin cream with applicator and now have a yeast infection which requires an applicator to use also.  I give up!  What products do I forego during this mess?

      kathy

  • honeyduck74
    honeyduck74 Guest

    Posted

    Hi Debbie,

    I'm in Fareham, Hampshire, and was finally sent to a dermotologist  in January of this year after my doctor not knowing what to do with me, I had a biopsy taken in March and am using dermovate ointment (not sure it's doing anything) I am due back to see the consultant in a couple of weeks, to see what happens next.

    I am 38 but have been suffering for too many years, are you having any treatment?

    Rachel :-)

    • Guest
      Guest honeyduck74

      Posted

      Hi Rachel, the only treatment i have at the moment is dermovate twice a day as so bad all over and round the back and has now come out into my groin, makes wearing clothes very uncomfortable and painful.

      My colleague has got me some Emuaid which i started using yesterday so will see if that makes any difference, i am desperate and will try anything.

      I carry around an Intelligel cushion as has been so painful to sit but luckily my manager is also an occupational therapist, also taking lactulose as have tightening on the anus (sorry for bluntness dont know how else to describe that!!) the whole thing is horrible and am really trying to stay positive but so damn hard when it is such a lonely thing to deal with!!

      I have made some changes to diet and clothes etc, eating less sugar, no wine GRRRR, eating more tomato food stuff, less caffiene and dairy. it is definately better than a couple of weeks ago but still a long way to go!! 

      Have you tried any other things? anything that works for you?

      Debbie

       

    • honeyduck74
      honeyduck74 Guest

      Posted

      Hi Debbie,

      I have been prescribed Oilatum to use for washing (which has helped me a lot) and I have a big tub of hydromol to keep things moisturised, I also have it "round the back" which is uncomfortable and I find if i put anything on that it makes it feel worse - being moist makes it worse (sorry if TMI) :-)

      I bought some emu oil in February through Amazon, and have found this to be soothing, but then stopped as I kept getting thrush every month so thought that might be making it worse. Have literally started the emu oil again today, and everything feels slightly more comfortable and less pulled. 

      I know how much this can drag you down, I have to think about how much sitting down i'm going to do through the day before I can decide what I can wear - jeans can be a no no at times, have tried to explain to my friends and partner, but I don't think they can ever really understand, it seems to be on my mind all the time, and i get grrr about having these problems for so long (probably started in my twenties) I just want to be 'normal'

      My partner is great, but i can no longer have sex and haven't been able to for a couple of years now - that bothers me alot :-(

      Re diet, I have tried to cut down on sugar as much as possible, and like you wine has been cut down to twice a month :-/ I have also started a probiotic, in the hope it will stop the thrush, not sure if it will do anything else?? LOL

      These forums have been a godsend, prior to my biopsy I was worried sick, and all the ladies on here have been so helpful.

      When were you diagnosed?

      Rachel x

    • Guest
      Guest honeyduck74

      Posted

      Hi Rachel,

      I was diagnosed about 10 weeks ago, had no idea. never heard of it, the gp took 1 look at me and saw the white patches straight away! scared the hell out of me though asking if I had children and did I want anymore! luckily I have 2 gorgeous children and don't want anymore but blimey!

      I am using dermol instead of soap which is ok, not sure if that is helping or not? definitely not good with moisture! and now have lots of leggings instead of jeans!

      waiting to see dermatology specialist but no appointment yet!

      my husband tries to understand but doesn't really, he thinks I should swim in the sea and still thinks we can have sex! not in the sea! lol!

      I am really struggling with reducing sugar intake and my now lack of exercise! All the things I like doing I can't and haven't found anything that causes no pain. have you?

      Debbie x

    • honeyduck74
      honeyduck74 Guest

      Posted

      Hi Debbie,

      Sorry for the delay in getting back to you I juggle two jobs so life is very hectic and stressful (which def doesn't help LS) I am struggling with reducing sugar, tried sweetners (yuck) so now going without in tea but its difficult, as for the rest of my diet am trying but it's hard!

      I do manage to exercise (zumba twice a week) but I do have to be careful with certain moves, I have found the switch to more comfortable underwear (granny pants!) has helped, and also salt baths, some ladies on here have suggested bicarbonate of soda in the bath, I bought some but never did try it.

      I have found the moisturiser Hydromol has helped as well, it was originally prescribed by the dermatologist in January, its like thick vaseline, no smell, and it has helped with cracking and splitting, and just making everything feel less tight

      How are you getting on with the Emuaid? is it helping? will find out the result of my biopsy in 2 weeks, the problem is if they turn round and say it's not LS then what do I do?

      Also I don't have white patches, just generally pale and apparently I have 'shrinkage' I just thought I was petite LOL sometimes you have to laugh other wise you cry ;-)

      Look forward to hearing from you

      Rachel x

    • Guest
      Guest honeyduck74

      Posted

      Hi Rachel, I understand I work full time and have 2 young children to juggle with school pre school and different child care situations!

      I haven't tried the salt bath yet or bicarb. The last time I had a bath it was so painful I haven't tried again!

      I am only using the emuaid once a day at the moment as worried making it too moist! Yuck but only just got over yeast and fungal infection, double yuck!

      I might try hydromol I have it at my work for my patients so could have a go as dermol not seeming to do anything!

      I must get some granny pants but have no money at the moment as selling my old flat that I've been struggling to sell for the past 5 years so all this will be over Friday and then I can sort my life out!

      I have the white patches but also the paleness you talk about! If you don't have LS don't know what it could be! For your sake I hope it's not as it's depressing as hell and a relationship destroyer!

      Just a waiting game till results come and try not to stress as makes it worse! That's what started all this in the first place for me! Although I think I have had it for years looking back and had awful flair up a few years ago but didn't know what it was and nothing else till now!

      Have a good weekend

      Debbie x

    • hb88
      hb88 honeyduck74

      Posted

      Wow I have LS and live in Lee on Solent! Small world x
    • honeyduck74
      honeyduck74 hb88

      Posted

      Hi,

      Sorry been a bit behind with all my emails, have just seen your reply, Lee on Solent isn't far, are you under the hospital for your LS?

      Rachel x

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