LS just confirmed after biopsy
Posted , 5 users are following.
I am one day into discovering I have LS. Out of nowhere last December I felt what I thought was a small lump in my vulva, then two ulcerated and inflamed areas appeared and I would literally scream when I had to pee, it felt like someone was setting fire to me. Nurses and doctor at my surgery had never seen the like, so I was referred to a lady gynae at my local hospital - only problem was the wait for an appointment (2 months), then being told I needed to have multiple biopsies under a GA (another 2 month wait) - all the while nothing to help the burning or the pain as until the results came through no-one knew what they were treating. Following the biopsies I have had a 5 week wait for the results, during which time I have often had to go back to the ward in agony, all they could do was give me anaesthetising gel to ladle on. I have shed buckets of tears, in pain and frustration - and to top it all I developed severe thrush on top of the problem areas. I cannot describe the pain - I did all the things I was told, loose pants or no pants, aqueous cream, no soap etc. Sitting - agony, nighttime- agony. wearing clothes- agony. At last the results were phoned to me by my consultant yesterday(14th) and Trimovate prescribed. Apart from never having heard of LS I wasn't given any information about the condition - I have got that on-line, nor was the problem of the accompanying pain addressed (lower abdomen, groin). Tonight I start the Trimovate - my GP told me they don't tend to prescribe Dermovate for the condition (though I notice many of you have had it). I wonder has anyone else been on Trimovate? I am 59, post menopausal, singel and been celibate for 26 years - so the condition can't be aggravated by sex obviously. However I have had 3 spinal operations, suffer with Ankylosing Spondylitis and IBS - and there are thoughts that LS is linked to these as an autoimmune disease. Does anyone else know any more? As LS is a pre-cancerous condition I contacted Macmillan Support, but it appears there are no support groups for people with this particular condition, only this site. Does anyone know of any groups? I live in East Sussex and I don't know about others but living alone I really could do with contact with fellow sufferers. This condition seems so hard to live with and understand, and not one easily explained to 'just anyone'. I have read many of the postings and have bought Replens to try, but the Paladin cream mentioned is not listed in the Pharmacists book so am a bit at a loss with that one. Hoping to 'meet' for mutual support. :?
0 likes, 16 replies
Guest
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I also am having a flare up at the moment and have a dose of thrush thrown in there as well. The two seem to nearly always appear together for me ,which is why i was misdiagnosed for years with thrush.
I am sure there will be other reply',s of more help than mine, but i wanted to reassure you as soon as possible that you are not alone and my thoughts are with you out here in cyber space. Take care and keep posting. Netty x
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TC1310
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I seem to be the only one actually NOT suffering at the moment (famous last words)! I use aqueous cream which helps for me and also KY jelly is great - I know people use it for other things but as a cooling thing and a lubricant it helps- I do feel keeping the area lubricated helps. My doctor has also recommended that I cut down on acidic foods and especially orage juice or lemon juice. Also, sweet stuff- but then as I'm diabetic I'm not supposed to have yummy things like that anyway
I found the steroid cream didn't work for me- I think there's different things to try and each of us reacts differently- I also found ice cubes in a plastic bag slightly melted helped- but do be careful they don't give you ice burn.
I was suffering really badly not that long ago and now it seems ok- had a smear last week and my doctor said there seemed to be no imlammation at all- at the moment. Stress can also bring it back and I'm trying to be COOL with everything but you stress when it starts to hurt
Hope you're well
Trish
papillon
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Just wanted to thank you all for sharing your experiences, Netty, Trish & Scuba. It really helps to know others understand how debilitating LS is. The list of different things to try is now so long I will be able to keep pharmacies afloat single-handedly! (Well it WOULD be funny if it wasn't so tragic) I, too, get very weepy reading other postings - and though I wouldn't wish LS on my worst enemy - in a strange way it is good to know you're not alone. At least we can all say how we really feel and not put on a mask. thanks again and hope we can all keep posting & helping one another. chins up, Jan xx
Guest
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Guest
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I hope this helps someone out there, good luck to all posters.
Dean
HeidiW
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I was diagnosed with LS 2 years ago - but have had the condition for 3 years (a years initial mis-diagnoses from several gp's)... The consultant that eventually diagnosed me said that it was 'just' a skin condition, and to have treatment with a steroid cream. That's all the info I got from him and so searched the web. The invaluable advice on the web was a huge relief, as was the forums. A few tips are as follows:-
Cotton underwear, Loose trousers, (jeans are a killer, must be the seam that rubs or something) Non Bio washing powder, dont use shower gel/bubble bath - use emollient to keep the area moist - a small tube in your hand bag is great and one in the fridge !! Eat a healthy diet, and dont get stressed - maybe try yoga, stress can really cause a flare up. Avoid sugary foods, also aspartame in drinks apparantly...... Use the steroid cream as prescribed - dont be too worried about the stuff people say about thinning the skin - it's worth using for the relief - plus, I was told that the thinning mainly occurs on areas exposed to the sun - I doubt we;re going to have that problem
I changed consultants locally and ended up seeing a professor in london. He was fantastic. Explained things so well to me.
I had fusion over the clitoris and had surgery to put this right. Itching was unbearable and infections and other stuff galore. They say it is an auto immune condition. A severe skin condition - apparantly other auto immune conditions can occur and go hand in hand with LS.... I had alopecia after I was diagnosed. I also suffer from IBS. Even though I have had the op which has sorted some stuff out - I still have the itching etc - its a complete nightmare! I ended up leaving my job - I look after my children now, and that has relieved some of the stress in my life.
I am trying to get some kind of response from 'This Morning' - I would like to get word out there about this disease. I will keep hounding them! lol
Oh, Also, Fabia Brackenbury from the NLSSG (key this in to look at web page) is looking for newly diagnosed LS suffers to contact her - for the tv programme 'Embarrassing bodies'. Not sure if she's still looking as havent looked on her site for a couple of weeks, but worth noting - just in case anyone is up for it.
We all need help, guidance and support from time to time - and these forums are great for that support. I am blessed to have found fellow suffered who understand what I am going through. Thank you.
Heidi
Guest
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Very encouraging to read of your experience. Very difficult for you to give up your work. You seem to have adopted a positive attitude to this disease. You recommend avoiding stress but this proves impossible with the persistent pain.
I too have been to dermatologist and gynaecologist who can only offer a steroid cream.
Heidi. Would you please reply and tell me how you managed your alopecia and to what extent your scalp was affected.
Keep posting Heidi. We need encouragement and hope from strong women like you.
Like you I carry emollient in my bag to work etc. but like you I too will have to stop work as it is so damn stressful. Lowered feelings haunt me. My doctor and dermatologist say I suffer from severe anxiety (no wonder) and advise an antidepressant. But I am too afraid to take antidepressants knowing their sideffects. Would really appreciate any tips to de-stress. Thank you Heidi.
HeidiW
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Regarding the alopecia - I woke up one morning and found that an area of hair was gone - about the size of a 50p piece - I was at the front of the scalp and very noticeable. I went to the doctor (they are always mis diagnosing me) they thought it was ring worm ! I dont have pets etc... anyways - I had a second opinion - and they referred me to a dermatologist who explained that it was alopecia and could well be connected with the LS as it is an auto immune condition. I was prescribed cream to put on the area. They said more off my hair could come out, or the area may not grow back at all - luckily no more fell out and it's growing..... although it sticks up a lot now haha..... I wore a head scarf at work at the time. I was at a very low time during all that.
I too was advised to go on amitriptyline - an anti depressant as they said it would supress the nerves which can be the cause of the excessive itching. I didnt follow this advice as I too had reservations about the addictive nature of this kind of prescription. The other thing I get are hives - little, itchy bumps on my skin. Itch like mad! This too is all auto immune related.....
Anyways - I decided to de-stress where I could, follow a healthy diet - I tried cutting out all wheat - apparantly it helps - I didnt find it helped me that much though - so I eat wheat - just not much bread...
I can't excersise - I get sweaty and that makes it all a million times worse!
I havent tried riding my bike since being diagnosed.... and ice skating seemed to make it worse too.
I am going to try Emu oil as its more of a natural 'remedy'. Its meant to heal the skin and relieve itching and pain in the area. i have already bought some and will keep you posted as to how I get on with it,
There is no cure for this horrible skin disease but there is support.
I hope I havent dronned on too much. I just want to help others as much as I can. Don't be afraid to talk about your concerns to your doctor - Always ask for another opinion, this is your life and your health..... and it is YOU that know your body more than anyone.
Keep me posted as to your progress, be strong, you're not alone out there.
Guest
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HeidiW
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I didnt need to have any biopsies taken - I was visually diagnosed. My clitoris was completely fused over - I had an operation to seperate the area - and am now using Dermovate 3 times a week and I use Pure Emu Oil for the dryness of the area. I find this a lot better than Epaderm - which i found very thick and just hurt too much when I applied it.
I think it's finding a balance and finding what suits you as an individual.
Hope to hear from you - and hope your procedure went well.
Again - apologies for the late reply - which I am sure you would have needed sooner.
X
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ellejelly
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