is there anyone in sussex with LS
Posted , 8 users are following.
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
Posted , 8 users are following.
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
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HollyPH Guest
Posted
Guest HollyPH
Posted
suedm Guest
Posted
(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 Guest
Posted
Guest kelly86460
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carolina80209 Guest
Posted
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 carolina80209
Posted
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 Guest
Posted
Good luck
justine89448 Guest
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kathy46259 justine89448
Posted
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 Guest
Posted
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 honeyduck74
Posted
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 Guest
Posted
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 honeyduck74
Posted
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 Guest
Posted
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 honeyduck74
Posted
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 honeyduck74
Posted
honeyduck74 hb88
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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