White patches appearing overnight!!?
Posted , 5 users are following.
been diagnosed via biopsy for almost a year now, had it under control with clob, maintaining with once a week application. once a week i check down there too to see it all looks ok. i have been feeling itchy this week but im on antibiotics ans its hot in the uk at the moment, both things that are triggers for me. anyway to my horror i have a white scaly lichen patch running down my inner labia. can this happen this quickly??? i swear it wasnt there last week. will the clob get rid of it. i feel like i was maintaining so well. i could cry!!
0 likes, 17 replies
Guest emmy2018
Posted
Skin changes can easily occur overnight. Your new white patches could be due to antibiotics and heat. Are you sure it is LS and not a yeast infection from the antibiotics? It itches?
emmy2018 Guest
Posted
it's not a yeast infection, i am well accustomed to getting those from antibiotics and i don't have any discharge.
yeah it is itchy but not desperately so, the main thing is the appearance. it does actually look like "lichen" as in it is scaley and rough to touch, lighter than the rest of my skin...
deethebee emmy2018
Posted
sounds like it's a flair up. I would add the steroids every night for a week, then every other night etc etc . It's such a horrible thing, it can change over night for me and the speed of the changes is frightening. I'm sure it will ease once you are off the antibiotics.
deethebee
Posted
*use not add
emmy2018 deethebee
Posted
yeah i am going to use the steroid every night this week and see how it goes xxx
deethebee emmy2018
Posted
I'm in the UK as well. sounds odd but it's nice to hear from fellow Brits suffering with this silent disease.....
emmy2018 deethebee
Posted
thats the biggest thing i got from this forum i think, seeing other people have it! there isnt a lot of info online so this forum has been a saviour!
NHS isnt too great at diagnosing LS either so i went private to a vulval dermatologist. that was a year ago and i dont really want to pay those prices for check ups (£170 a visit) but my GP isnt experienced enough. before diagnosis one GP said i cant have LS because im not old enough and its post menopausal women who have it!!!
i need to figure out who i can see who will know about this condition becauae how fast this has developed has scared me and i want someone to check it
Guest emmy2018
Posted
Here in the US we, too, know the expense. I have had 9 gyn appts this year with 6 doctors, $270 out of my pocket, over $
2 thousand out of the insurance company's pocket and I'm not sure I know more now than I did when I started as I can find most of this info online. Check the International Society for Vulvo-Vaginal Diseases.
We here also suffer from practitioners who cannot diagnose, or won't diagnose, I'm not sure which. I and several others have scrips with no instructions on their use, we've tried numerous lotions and potions, finding some that help but spending lots of money in the process and now I have a small pharmacy under my sink of these "Miracle Healing Substances," that didn't do squat (did nothing). Frustration seems to be the name of the game. I read somewhere that the average woman with LS goes through 6 doctors before she finds one that knows something. So We Are Not Alone in this journey. I urge everyone on here to keep at it. It seems like we have to help/cure ourselves. The support on this forum is a blessing. Thank you all.
I have some other research to post when I am doing thinking it through.
emmy2018 Guest
Posted
oh i know its terrible, loads of women never get a diagnosis and suffer for years and years. i researched a consultant who specialised in vuvlal dermatology as i had exhausted all other possibilities such as sti's or thrush or skin infections, i felt like it muat be some kind of dermatitis. it cost me a lot but was worth the money. this woman really knew her stuff. she even told me herself that a gynaecologist wouldnt have experience in diagnosing or treating LS unless they had a particular interest in skin.
LS is one of those things where there isnt one treatment, we all have to keep researching and trying didferent things ans then even when we thinked we have cracked it it can change!!
i am so grateful for this forum!! xxx
Guest emmy2018
Posted
what city are you in? Would love to go there. Can't find anyone here that really knows. Hope she's doing you some good.
emmy2018 Guest
Posted
i am in london in the Uk and this consultant has a practice on Harley Street which is a famous street in london and well known for the top specalists in medicine. probably because it is so expensive to have a clinic there!! i havnt actually seen her since last october because it is so costly but its hard to get someone on the nhs who has experience with LS but im going to try xxx
Guest emmy2018
Posted
Yes, I have heard that it is hard to get appointments with somebody that knows something. Same here. Takes 6 months to get in and when you do they don't do anything and charge you or your insurance a ton of money. I am trying to find a dermatologist who knows something about vulval problems but so far, nothing.... Keep trying.....
Su02 emmy2018
Posted
HI emmy ive been diagnosed around a year too. Im on top of it most of the time altho not perfect. I did revisit my gyne last month with the same thing felt a scaly sore area on left of labia going into crease. Athough i have no white patch. She couldnt see anything and to be fair neither could i on the camera screen whilst she was examinging. I was advised to apply streroid everyday again. so you are doing the right thing. Im learning to try and not get paranoid about it stress and worrying contributes. Im in the UK to Emmy. I now am on an open appointment system so if i feel im not on top of things and worried i can ring the gyne secretary to get into clinic within a few weeks rather than months. Are you using any moisturisers as well as?
emmy2018 Su02
Posted
ahhh thats interesting!! ok so i never saw the NHS gynae because i was offered an appointment for february 2019 back in september 2018!! and i thought there is no way i can wait this long so i went private. maybe i need to ask to be referred again so i can be on the waiting list to get a check up. ans if i do have a flare up i can be seen on nhs instead.
yes i use cetraben daily to wash with and as a moisturiser and this works well for me, as i say i am usually on top of it and symptom free
i have an ear infection which im on anyibiotics for and feel tired and run down so its probably all linked to that, ur right i do need to stop worrying about it xx
caroline1311 emmy2018
Posted
Hi emmy ,
Are you sexually active when these flare ups happen , as i can get mine under control then when i become sexually active I i get s flare up straight away i only got diagnosed one month ago , i am so worried this will always happen ??
emmy2018 caroline1311
Posted
i have been sexually active the entire year since diagnosis with very few issues. only time i have an issue is if the skin tears but i havnt had that for ages. been with my partner for 9 years and have two kids under 5 so i wouldn't say its that often but a "normal" sex life has ensued! one month is still quite soon, im pretty sure i swore i was never having sex again at that point lol! it took a couple of months of treatment for me to really get things under control and pain free. sex is definitely a trigger though, i know a lot of women have difficulty with that. do you apply lubricant? i dont know if this would affect you but some condoms and spermicides they use on condoms can be irritating. i also know for me any kind of discharge is irritating for me, period, my own during sex...i have to wash with water straight after the deed, pat dry and apply cetraben (my moisturiser) if necessary.kind of a mood killer but worth it xxx