lichen sclerosis

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Hi, I joined this group awhile ago because i was doing some research on my own and thought this is where i had to be.. Can Any of you please tell me what were your first symptoms with this uncomfortable position i am in. About two years i went to the gyne when i had a bad outbreak with my thyroid with psoriasis under my breasts, and extrem vanginal itching. Doc gave me numerous scrips of Diflucen cream. Psoriasis disappeared immediately with nystantin and maybe another cream. Vaginal itching comes and goes all the time. I use clop"maybe gyno gave me that also"  and the itching goes dormant but only to return off and on.with a tiny pimple or little raised spot on most occasions.. Gyno told me to come back when itching starts again and she would do a culture to see what kind of yeast it is. She gave me some internal cream also but to no avail   always comes back.. I would appreciate ay info any one can share.. thanks so much.

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  • Posted

    I have always had problems with yeast infections and a lot of anal itching. The doctor always said some people are more prone to yeast infections and the anal itching was from hemorrhoids (which never made sense to me). Anyways almost 2 years ago at my annual the doctor mentioned some whitening and recommended a dermatologist who said she thought it was vitiligo. Fast forward to a few months ago and I had yet another yeast infection and started researching on my own and came to this site. I was completely convinced I had ls. I made an appointment with my gyno because I looked in the mirror and noticed fusing. I,was diagnosed on examination and then by biopsy. So I feel I had it for a long time but was misdiagnosed. Question the doctors and ask them if they think it could be ls.
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    • Posted

      Haemorrhoids allow faecal fluids to leak on to the skin because the sphincter muscle isn't effective any more in keeping the fluid contained in the bowel. The faecal fluids contain powerful enzymes that digest your food but doesn't stop the action when outside the body. Hence the burning Itch around the anus can be caused by the skin being ' digested'  Thick barrier creams are worth a try
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  • Posted

    I have had LS for much longer than when I finally was diagnosed.  But because I had never heard of LS or what it was, I thought the discomfort was maybe because of giving birth and the snip that was done at the time.  

    After the diagnoses and further LS mishaps and experiences and this over a period of time of a few years now,  I have experienced the same discomforts but this time in reverse. I now know that it started at the very top of the vulva and at the very bottom.  Till indeed all, except for a pinhole for urinating was fused up.

    Another item I need to mention - LS can be maintained and kept at bay, but can not really be cured.  With the right treatment, which many of us have had to figure out for ourselves by trial and error, it will become manageable and 'every day routine'.  

    Your story sounds very much like LS.  But it needs to be proven to be that by doing tests.  

    Wishing you the best outcome for your problem.  

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  • Posted

    Following an extremely stressful period in my life.... The full deck of stressors... Marriage break up moving 100 miles from support network, selling,  building a house on my own, nursing a dying relative who tried to commit suicide in front of me, Homeless or rather no fixed abode for six months, then an extended  period of travel staying with friends etc I put on a bit  weight when life became calmer. I was still abroad in temperatures of30-40+ wearing  trousers a tad too tight and The Itch developed Got worse and worse Mouth ulcers and sleepless. Self medicated with anti thrush pessaries and creams, mild hydrocortisone and high dose Vit B complex( the pharmacist said travel was the main culprit and the B vit would help it did for the mouth and improved sleep) 

    The Itch remained, no sign of. Thrush but very red swollen with raw patches and vulval skin would come off on loo paper when dabbed dry after urinating ( the pain was intense I sat on burning coals for months nothing seemed to help water REALLY hurt urinating was even worse) I 

    consulted GP who didn't look just prescribed heavy systemic anti fungal medication alongside creams and pessary. No change in The Itch

    The anatomy had changed with the labia on one side fused. Going for a Pap smear I mentioned the Itch and the change of shape. Neither the nurse or the gp had seen anything like it and I was sent to gynae to be diagnosed. The potent steroid was agony to put on but I perservered and within a few months everything has calmed and after 2 years I was discharged from consultant care and for 3-4 years I have had no follow up appointment... NHS cuts... Flare ups happen if I get stressed for any reason. It starts with an itch and  can intensify rapidly until stressor goes. I up the clobetasol during this period  I had 20 addresses in 8 years, 

     I use it most days  after bathing, I use Diprobase as a moisturiser barrier cream. For years before The Itch I found that my husband's sperm was a huge irritant and I would have to wash it away immediately. I became non responsive on the odd occasion he wanted sex. He had MS and so many years of celibacy was the result ( I thought it was his love of chilli and hot spices that burned me! But it probably was the stress of living with him)

    Fusing continues. I urinate at right angles now showing that there is thickening of the tissue in that area, so changes continue progress albeit slowly. I retract the clitoral hood while in the bath as tissue thickening in that area also. Never had white spots or patches occasionally blue painless 'blood blisters' that disappear

    hope that helps your research

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    • Posted

      Just reading your post again Sue and the thing that struck me was the constant moving of abodes. 20 addresses in eight years! Looking back now we always seemed to be on the move, in one period of eight years we moved six times. Our choice though mostly, only a few were work related, it was us renting and building several times. But how much more stressful for you to do it on your own! And be 'homeless' at times. That's tough all right. They say moving house is almost as bad on the stress scales as divorce! 

      Sometimes I wish I could do many things over again but we're stuck with the choices we made often and then there's fate .... and luck...

      I hope your lifestyle is more settled now. I know I ain't moving again! 

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    • Posted

      One thing it taught me was to be flexible, another, home is where I am and to take hugh joy in friendship and such relatives that I have. I was shown enormous kindness and hospitality which humbled me and now I AM settled- for the time being - I like to return the compliment as much as I can- I know how very small acts of kindness lifted me when I was at a VERY low ebb. I used the maxim laugh(or smile when laughter was TOO hard) and the world smiles with you - cry and you are on your own...and HOW! The great help this site provides to the contributers and others we hear nothing of is tremendous

      At one stage I had no one to talk to, bounce ideas off or confide in, and the Samaritans were wonderful- no I wasnt for taking my life but I needed a listening ear and that was a terrific help Moving house and the year or so afterwards is as you say stressful - but after a while it can become a way of life. Now when i am asked where i am going on holiday - i am very happy to say I have done my wandering and love my home

      I am convinced that many if not all autoimmune conditions if not instigated are exaberbated by stress- so my mantra is KEEP the stress levels at a healthy level - and laugh and smile as much as possible - Dont get cross - if the news in the media depresses / upsets you dont watch /listento or read it. when feeling on an even keel - go back to bigger stuff if you want but healing should take priority- you are no good to any one or cause if you are under parr!

      Must go - Art class awaits

      Sue

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    • Posted

      I like your mantra! I am already realising I need to follow the same path. In many areas of my life. Good luck to us all. 

      ps art classes sound like a great idea. I have done them in the past and enjoyed. Maybe time to look for a new art class in my new city 😀

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    • Posted

      I also belong to a walking group, some of the friends I made there have formed a small table tennis club and I enjoyed playing so much I have persuaded my local village to invest in some tables and I hope to play locally as well. We laugh such a lot. Also I formed a lunch group with the first people I met when in a new area, 'twas all female, but the husbands' lower lips trembled, now a bunch of them go for a Men Who Lunch group in various pubs. So me trying to reduce my stress has had several side benefits too! Not the least because I am a single female of a certain age my lot was to stay at home when couples went out or on holiday, however I too get invited to stuff that I would have been invisible to in the past 

      Have fun, and enjoy your new city...which one is it?

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    • Posted

      Tauranga, in New Zealand. We landed up here so as to be closer to kids who each live 2 or 3 hours in different directions from here with respective families. But as explained first the back, then the LP then mouth and osteoarthritis. It's so unfair I wail at hubby at times and sniffle about. But I always try and keep going. Have made one friend at an attempt at Thai chi. The friend stuck, Thai  chi was too much for my back. Some friendly neighbours but definitely need more in my limited life.  Because of not being able to sit for long it limits scrabble and mahjong and I've tried both. 

      I need to join a group but the big question is what. Any suggestions welcomed, like walking but too frail right now for any things but short ones on the flat. We try most days. The secret is having something to look forward too. Like yesterday my friend brought her twin granddaughters over, after two hours I looked forward to them going home....

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  • Posted

    Hi i also had a outbreak of psoarisis just before the symptoms of lichen sclerosus started, this was when i moved away from home to go to university. This outbreak lasted for several months and then i started having really bad itching on the vulva. i was passed from doctor to doctor until i was diagnosed with lichen sclerosus, since my diagnosis i have had so many different symptoms appear now 
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  • Posted

    Stress stress and after that, stress got me, in retrospect. You just know that stuff is going to get you in the end. 

    Changing cities multiple times for husbands job, losing kids cause they get too old to want to move with you. That's a kind of bereavement when they both go in the same year. You lose all your friend support system every time too, and family. 

    You develop things like IBS and reflux disease and anxiety and box on trying to push everything down. Then you start getting problems downstairs. Sore, dry, oh that's your age cry the medical people, it's thrush, it's atrophy because of your age. You dread having sex after a while as it really hurts and there's been a sore spot for years where you were burned or roughly treated during a pelvic floor repair via vagina. In the end you give up sex. Luckily he is understanding although not yet ready for the celibate life. We still cuddle and suchlike. Ten years goes by with occasional soreness and doctors saying its natural atrophy, here, try this oestrogen. Or It's thrush again. 

    Then we move again at age 66 to yet another city where we know nobody, our final move we say, then my back disc prolapses and I am in hospital and then two years recovering with a very strong narcotic while we are building our final house. So two moves in one year.

    Then addiction from the narcotic which takes six months to beat, meanwhile mind and body give up, deep depression due to the health problems and then WHAM! Full on Lichen Planus diagnosed after many doctors and specialists and biopsies. LS was initial diagnosis but I knew by then that NOBODY else in the LS photos and stories looked like me.

    Mental health people are involved now as suddenly the will to live is getting quite battered as I develop osteoarthritis in my fingers while I watch, as they burn and twist to weird angles. I start large doses of prednisone to help my vulval lesions try to accept Clobetesol, (which it has never done yet in over a year as it just burns me badly) so I use a lesser steroid cream which doesn't really quite do the job. The prednisone has its own not so nice issues which upset the applecart emotionally and physically as well. Oh joy!

    I develop lesions in my mouth and raised lumps and ulcers and after biopsy find that no, it's not OLP but a food reaction. Thank you God! Trial and error with food and Lo and behold, it's the nightshades I must avoid! No more pepper, potatoes, peanuts, tomatoes *sob* or aubergines. To go with the no sugar, no gluten, no dairy, no caffeine *ditto sob*, no preservative, no alcohol. I used to be quite a big girl last year, now I am a normal BMI old lady who looks her age. No matter, the counselling helped, the weight loss, three stone, is very beneficial for many reasons, I accept my lot and deal with it every day. Keeping stress down is my main concern now. Learning to deal with it, practising mindfulness. if I don't, what's the alternative. 

    I have LP but I am on this forum as its so rare that the other LP forum rarely talks about anything other than the oral sort. In many ways, especially treatment, it's the same. The people here are my lifeline. Have helped me every day since I found this site. Bless them. 

    Good luck with your journey Kathy. 

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    • Posted

      Thank you all who have answered my question. I will be going to the gyno in a few weeks to confirm what i have or do not have!!  hoping for a good outcome and will post my results..
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    • Posted

      Oh Lynne you have been thro the wars..... They say what doesn't kill you makes you stronger, and boy you must be strong to overcome your narcotic problem...AND to give up so many things you obviously enjoy... I am full of admiration ....quite the inspiration girl!

      re the LP I read if it affects the mouth sluice around with coconut oil for 5 mins...as an anti viral as well as antibotic it probably does great stuff else where

      i know you know but do try to make someone laugh everyday if you can...it does take stress down a peg or two 

      take care and pecker up

      Sue

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    • Posted

      Sue, thank you for your inspirational words! Sometimes I don't feel strong at all, especially when I am sobbing at the sight of a croissant loaded with tomatoes and cheese going down my husbands neck lol. But yes, I am trying to pick myself up and getting out and about now. 

      I do try and make someone smile at least, even if not laugh out loud!

      And I have heard of the coconut oil and have used it before. As I don't have itch I usually have no creams or oils down there but for dryness it's good as is emu oil. Neither burn or give me problems.

      thanks again, I will think of myself as strong! 😀

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    • Posted

      Just think what lovely clean arteries you have spurning the clogging cheese and butter laden croissant horrors your husband is guzzling....! You can smile and think how clean you insides must be

      The coconut is also supposed to help reduce inflammation I believe.....but it must be first pressed preferably organic

      take care and keep smiling

      Sue

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