Think I've got lichen sclerosus. Need a little help plz
Posted , 8 users are following.
hi 🖐🏼
hope your all well as can be
im 34 years old and would love if anyone could help please
im at my wits end with this headache
ill try to keep it short
Iv had what initially i thought was thrush just over a year ago kept treating it with thrush creams dr prescribing tablets for thrush and timodine for the intense itch then a few month later i started spliting in my skin right at the crease of the labia minora where it meets the labia majora my skin would get right tight at the top part of my vulva a would crack and get real sore, drs tested me for stis yeast bv had the pap smear bloods and everything is coming back fine recently it feels as if my anus is too tight when passing a bowel movement and i crack and bleed on the outside, still getting tears more frequent ones and sex hurts and i get cuts from sex too iv noticed my inner lips are shrinking and now iv got white patches on the top where it gets tight and on the inner lips and around the clit iv been rubbing and scraping these patches quite hard and some bits crumble off almost like tissue paper theres times iv thought it is tissue but its not because i wash with water when i go to the loo and pat dry. i cant wear knickers anymore iv found it helps to put a thick layer of vaseline over my skin and when I rub the white patches hard and bits come off the skin underneath is red raw. iv been red really bad and itchy sore and like tiny needles pain going on too.
my gp said she thinks its time for a refferal to gynae if the last trial of antibiotics didn't help which they didn't they just made me worse with actual thrush on top of this headache. iv also got a brown spot that's just turned up out the blue in june im concerened as its never been there and all these other symptoms but only one dr has commented on that and said its just a freckly thing. i believe in my heart iv got lichen sclerosus after iv done research these patches of white are at the top they go down my inner lips and are at the bottom going down to the anus id just like to know if any of you have ever rubbed the white patches or scrapped with your finger nails and some bits come off resembling tissue paper almost like your exfoliating the skin. it itches so bad once youve done that and is red raw. tears are what i notice when iv had a wee due to the stinging. im going to my gp on tuesday and mentioning lichen sclerosus.
thank you for reading and any replies in advance.
0 likes, 19 replies
christine80363 Keepongoing
Posted
Hi,
Your symptoms are exactly the same as mine, in fact identical. I was being treated for fissures as I had extreme pain passing stools and had tried every heamaroid cream available. I had incredible itching and felt really sensitive in the vulva area and like everything blamed it on the menopause. It was only when I finally looked at the area with a mirror that I noticed the white patches around my vulva and anus that took me back to the doctors again. She immediately diagnosed Lichen Sclerosus and I asked for a private referral to a gyne as I didn't want to wait another 6 weeks to be seen on the nhs, I had suffered with this long enough. She confirmed this and I have started steroid cream which has given me welcome relief and has settled things down. I have been referred to her NHS clinic as I really cannot afford to go private continuously. I will the have a biopsy and yearly check ups. The steroid cream will be ongoing but tapered off with regulated use to keep things at bay. I feel absolutely devistated with it all, with my lack of knowledge too and after reading about the condition on line very apprehensive about the future and how it will affect me as a woman!! If that makes sense. Please, please get a referral then at least you will be with a specialist team who can support you, put your mind at rest and make you feel more comfortable. Afterwards tell every female you know to check their vulva's regularly, there is simply not enough awareness about this. Take care Lovely, you are not on your own xx
Keepongoing christine80363
Posted
Thanks so much for your reply im so.sorry your going through this too There really Isn't enough awareness at all i have endometriosis to which 15 years to diagnose and even then i did it myself.
so have you tried scraping /rubbing the white patches off?
its not fun one bit . its nice to talk to others that understand by hubbys been great with it must admit.
it is scary and the Fact theres no cure is hard to take on board i completely get what your saying.
tuesday ill make sure i get the referral.
i wasnt aware i got a reply was checking if my post went up.
have you changed what you wear and wash your clothes in x
christine80363 Keepongoing
Posted
Hi, sorry to hear you have also had to deal with endometriosis too, it isn't fair is it? I haven't tried scraping as it is more if a skin change colour for me, a kind of bleaching of the skin. I am older at 57 and was regularly using panty liners as suffer from a slight stress incontinence problem, so I have stopped those completely as they contain so many chemicals which are not helpful. I am using washable liners, real pain and expensive, but much better for delicate areas and whats more they are better for the environment. My Gyne has referred me to a pelvic floor specialist (gets better doesn't it !!) to hopefully improve that and eliminate the need for them. I really do think once you are on the correct treatment you will get so much relief, you will be able to feel a bit more hopeful and in some kind of control. The fact that there is no cure, does make it all a bit daunting I completely understand that feeling. Stay positive, Lovely x
Keepongoing christine80363
Posted
I always think theres worse off people than me then i don't feel so bad for myself.
i had to stop wearing panty liners also ill look into the washable ones.
oh ok part of mine is like the bleached skin you describe, then other parts are like a waxy white layer stuck on to the skin.
Hoping the pelvic floor drs can help you out.
i feel mych positive now that i feel i know what im up against, ill hopefully get some cream from the drs on Tuesday to help with it.
thanks very much for your time good luck with the biopsy,
keep your chin up.xx
Nancy_K_B Keepongoing
Posted
Good morning, KeepOn ~ smiles - well it is here in the U.S. I'm so sorry you've had LS for so long without a doctor recognizing it.
Yes, I tried scraping the white off and it hurts and is actually counterproductive. I too diagnosed myself from reading on the internet - and here at patient dot info in fact. I too got itch and splits in my anus. totally unbearable and I did anything I could to stop that asap.
Argh - so you've got to wait for an official diagnosis from a gynecologist - BUT you don't have to wait to get started on an autoimmune lifestyle change and nutritional protocol.
If you've found us here and taken a bit of time to read back some of our conversations, you may already know that we all start the healing management process by eliminating SUGAR out of our lives - from every direction including alcohol.
A couple years ago when I first joined in here I was told by others that we can eventually enjoy a cookie or something again after a few weeks ( but not three days in a row - and oh boy is that correct!). Some of us have discovered that they can not do WHEAT anymore, but I haven't noticed that causing probs.
What I did find from reading back about 6 years of messages is that women have gotten better from taking VITAMIN D3, and MSM. I immediately went on the war path to figure out every nutritional aspect to autoimmune diseases. Vitamin D has at least 5 co-factors that work synergistically. My cardiologist of all things totally knew about these worldwide deficiencies of vitamin D3 and magnesium....
Here is what I found:
https://patient.info/forums/discuss/nutritional-support-for-autoimmune-diseases-updated-for-several-skin-disorders-641279
also some very soothing aid:
https://patient.info/forums/discuss/aloe-vera-gel-with-tumeric-essential-oii-best-healing-ever--667353
And my "following my nose" research into the hows and whys:
https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033
Honey, I'm 73 so, past menopause, i.e. the hormone issue is no longer a problem for me, I don't think. BUt you might want to ask you GP to run a vitamin D test. ... and don't let them tellyou that you are fine with only a reading of 30 ng/dl. The real need for it is with levels up above 60 and I'm shooting for 80. I take 14,000 IU daily. At one point before I got officially diagnosed but was in intense pain during the holidays I took 20,000. My cardiologist later told me even 40,000 is safe (and taking vitamin A is a balancer for D).
Oh by the way, I realized after the anal splits stopped after taking vitamin D3 that my anus wasn't actually closing down - it's jsut that I was in so much pain it seemed like it.
Good luck and feel better really soon,
brenda23819 Nancy_K_B
Posted
my lichen sclorous is finally cleared up but after that cleared up i got lichenplanus on my skin i have white patches all over my skin that really itches . i got a new dermatologist and she sending me for a blood test. this stuff will drive you crazy.
christine80363 Nancy_K_B
Posted
Hi Nancy,
I am so glad you replied to this as I have been trying to research what supplements I can take to help this condition. The sugar info was very encouraging too as I am over weight and eat far too much sugar which I am desperately trying to curb, this info and its association with LS is the kick I need right now, so thank you. My diet is poor and this is the thing I have to address. Boy is it reassuring to hear the anal splits stopped, I was beginning to fear this was it for me as I have had this for months and even after a referral to the "Bum Specialist" (sorry the technical name has lost me at the moment) who after prescribing fybrogel and creams has failed to improve this condition, I hope that the diagnosis of LS will enable me to have the correct treatment. t
Thank you again.
christine80363
Posted
sorry this was for Nancy.....
christine80363 Nancy_K_B
Posted
Hi Nancy,
I am so glad you replied to this as I have been trying to research what supplements I can take to help this condition. The sugar info was very encouraging too as I am over weight and eat far too much sugar which I am desperately trying to curb, this info and its association with LS is the kick I need right now, so thank you. My diet is poor and this is the thing I have to address. Boy is it reassuring to hear the anal splits stopped, I was beginning to fear this was it for me as I have had this for months and even after a referral to the "Bum Specialist" (sorry the technical name has lost me at the moment) who after prescribing fybrogel and creams has failed to improve this condition, I hope that the diagnosis of LS will enable me to have the correct treatment. t
Thank you again.
Nancy_K_B christine80363
Posted
you are so welcome dear Christine. That list did take me a month I think - at least a solid 72 hours with no sleep to scour the web and only use MD's and ND's recommendations.
By the way, I've never taken the steroids - the supplement list and the aloe, liquid vitamin E, coconut oil etc have made me comfortable. the LS only flares when I've backslid on the no sugar prohibition. chagrin... if only that would have some with some weight loss - grin.
Guest christine80363
Posted
Christine,
Yes, by all means, you've got to change your diet. Think of it as an investment in yourself. I lost 70 lbs by cutting out fat and sugar and, while I Don't recommend doing it cold turkey, cut back 50% on the sugar and stop all canola and soy oil. No carageenan and xanthan gum as they can fuel inflammation. Get yourself some Vit B complex, C, and D. Find a good fish oil with at least a 2:1 ratio of EPA to DHA. It will say on the label. Might also try a quarter cup of baking soda in the tub for a bath
Keepongoing Nancy_K_B
Posted
Good morning Nancy, 😊
thank you so very much your lady after my heart im very into natural remedies and its how iv learnt to manage a lot of my problems, just can't combat the endkess fatigue and brain fog ill get there though.
sugar was the first thing i tackled when trying to get rid of this i thought i had a bad case of candida i also take coconut oil and collegen in my morning latte followed by a vitaminnc chew, i should probably switch to decaf. black seed oil a good probiotic with prebiotics and b vitamins. i use a spray vit d 5.000 iu two sprays so ill be getting 10.000iu maybe i should do more ill get my gp to do the test.
thanks very much for your informative reply the vitamin a is something ill.look into ill get a tumeric essential oil for sure and buy some more magnesium flakes i haven't used them.in a while but must admit they help a lot and i know that lots of us are deficient in magnesium. So thanks for the reminder really appreciate it. sorry you have to deal with this disease too hun i hope your feeling a lot better. Im very happy i came across this forum i can tell ill be on the road to feeling much better soon thank you once again 😘
suzanne36896 Keepongoing
Posted
I'm so glad I found this group. I was diagnosed w LS a year ago. My gyno was so nonchalant and was even joking about it. I have had so many issues with my intestines and bowel movements. After reading some of your posts i now know that my stools are thin and stringy because of the affect LS has had on my anus. i just recently downloaded a book on Kindle called The Maker's Diet. I've been following it for 4 weeks now and that area (anus) has greatly improved. i now have regular bowel movements and i feel like it has really helped. I've also given up sugar! It is poison for our bodies. With that being said....I have cheated some lately and I've started to suffer the consequences . It's going to be tough getting through the holidays wit so many diet restrictions. God bless you all.
Keepongoing suzanne36896
Posted
hi Suzaane😊
sugar is definatley the hardest for me i do so well for so long then i'll start to crave right around my period and ill crash i just need to keep it out the house.
sorry about your gyno sounds very frustrating, ill have a look into makers diet, glad its helped with the bottom area its torture the pain when passing. such a relief when its gone loading on the vaseline has helped for now.
thanks again for your reply take care hun x
arlette66668 Keepongoing
Posted
hi everyone, i am new on here. I'v for had LS for four years now. i self diagnosed before going to my gp, she was great and sent me straight to gyny who confirmed it. all within a week! i have been using the steroid cream ever since so i will definitely look to change my diet. i feel like i get flare ups every time i get stressed. right now i can hardly sit down as its really bad up my butt crack! sorry 🙄. its so nice to read that I'm not a freak! my partner doesn't even know whats going on as i struggle to talk about it. So embarrassing!
Keepongoing arlette66668
Posted
hi lovely, most definatley you are not a freak its another one of those terrible diseases that there isn't enough awareness for. you should try talk to your partner hun it might help, i know its embarrassing but their our partners for a reason.
iv got my refferal today dr said she doesn't think theres anything she should give me as we can't confirm it is l s the gynaes will decide what to do now. im hurting when i sit down too its awful. my left labia minora has shrunk so much this last week its shockin. hoping my appointment comes through quick now just for a definate diagnosis. part of me is convinced its the big c due to this new brown spot since June but well see.
its nice to be able to connect with other's going through similar things big hugs and do try talk to your partner hun xx
arlette66668 Keepongoing
Posted
thank you so much! i will try and talk but its not easy. i hope they send you an appointment soon! mine was rushed as i think my doctor thought it was cancer but i didn't think it was anyway. i hope the brown bit is a blister or something i can imagine how worried you must be. i have shrunk loads too mostly before my diagnosis. i dont have a hood on my cliteris anymore and my labia minora is all small and tidy now but with scarred edges which is not so attractive. sorry i was late replying, i need to set it so that i receive notifications somehow.
thanks again for your message. it brightened up my night. 😊
Keepongoing arlette66668
Posted
hi lovely
sorry took so long replying both my kids are ill its hectic 😣
hubby said if my appointment doesn't come through quick well go private hopefully itll be quick.
have you managed to talk to your partner yet?
so sorry you've got scarring and your minora has shrunk too its quite surreal when i check i can't actually believe its nearly gone so quickly
hope your having a pain free weekend
😊😘
Guest arlette66668
Posted
Upholstery or cushion foam is great to adjust your seating position. Also, roll a towel up and shove it under whatever spot on your bottom makes the pain less. Those two things have helped me try to live and work.