lichen sclerosis
Posted , 8 users are following.
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.
0 likes, 18 replies
melissa0 kathy94347
Posted
suedm melissa0
Posted
hanny32508 kathy94347
Posted
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.
suedm kathy94347
Posted
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
lynne1945 suedm
Posted
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!
suedm lynne1945
Posted
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
lynne1945 suedm
Posted
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 😀
suedm lynne1945
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Have fun, and enjoy your new city...which one is it?
lynne1945 suedm
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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....
Jessicat kathy94347
Posted
lynne1945 kathy94347
Posted
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.
kathy94347 lynne1945
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suedm lynne1945
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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
lynne1945 suedm
Posted
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! 😀
suedm lynne1945
Posted
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