FOR LICHEN SCHLORUS just got back from Dr. visit

Karen, yes i am with you, I will and she might throw me out of her office..haha..i am gonna see in a few months money wise and try and go with a vulva specalist.. dont have the funds right now, only medicare...thanks Karen for being here for all of us..all of you WONDERFUL LADIES ARE GREAT AND I FEEL CONFORT THAT YOU UNDERSTAND SINCE NO ONE ELSE DOES...janie

Brenda , i also use the aloe gel and turmeric oil that Nancy talked about here and it helped me alot, you should try it.  i hope you are feeling good ..janie

Starlight , yes i am writing everything i have been eating and that really helps...i have been spraying with the baking soda but i will try soaking with it.. i have been soaking with the Epson salt with coconut oil and that also helps ..look for the bag that already has the coconut oil with the Epson salt.. it feels cool    janie

Thank you Alesa, and it is a constant struggle for sure..hope you are doing good too..janie

HI Alesa and Janie and all sugar lovers ~ I had to give it up too.  I discovered Xylitol at the health food store which eased my transition out of sugar or honey.  NOw I've moved to a bit of maple syrup for my morning cereal and it doesn't affect my LS. 

I"ve also known about chromium for years because of hypoglycemia. Do you all know that this mineral really helps decrease our cravings for sugar? It has a whole lot of other heathful reasons for taking it.  

Wow Susan, I am sorry that you are experiencing fusion and loss of inner labia.  Being that I am not used to "looking down there ", I am finding it difficult to see .  I guess i need to find a lighted hand mirror or something.  Lol...

So is it really true that even if not in a flare or itching episode, the LS still continues to progress?

That is super scary.  Mine is small white patches on the inner most labia.  

This is weird because when I went to my GYN, i was not really having itching.  Now that I started the Clob, it seems to make the itching worse and not even where the white patches are ! I am having crazy itching on the outside of labia on the sides !  I can feel a lesion or something on one side.   UGH.. this is crazy.  

I am going to try the wash cloth soak since I read that bath soaks are not beneficial for LS. Prior to this diagnosis,  I took a bath almost every day ! 

Hi Becca, maybe stop the steroid cream for two or three days and see what happens...not everyone reacts well to the steriod cream.  Maybe you are one of the people that can only use it in emergencies.  The sore/cuts you have can be treated with something like Desitin cream which isnt quite as strong.  

Hi Susan, I too have lost my inner one,and didn't even know since i never had check before, that really freaked  me out,  I am not eatin any bread at all , everything with a  fork and water only, grilled chicken, salads no nuts, but i am eating eggs almost every morning and sometimes bacon...I am using my Emuaid Max everyday and do the aloe/turmeric oil too and spritz with water and baking soda after every tinkle....so far so good , sometimes i do have some itchin like last nite. it might have been my worries about going to see the gyn.  thank you all so much and Nancy help me so much with the aloe mix..that really helped me..janie

Hi Susan/ladies,

I haven’t had itch for months (knock wood) but that’s how it all started and I had no clue... My fusing is fierce and worries me, too. Right side gone, left almost gone, and also top area is covered now as well. I have been rotating products. I use baking soda water after every bathroom use- and emu oil and aloe with turmeric (sometimes plain aloe) plus a daily dab of steroid cream (betamethasone) <clob is so harsh for me>.  I’m hoping to get Emuaid but for now it’s not in my budget. 

I am finding bowel movements are becoming painful now 😢 The architecture has completely changed in less than 5 months front to back! And no matter what I do it keeps on.... When will the madness stop!

One thing I’ve been doing the last couple days is practicing calmness no matter what. I pray and meditate as well but stress is my biggest trigger. Plus it’s dragging me so far down it gets hard to cope. No! I say! It’s helping. 

Blessings and hugs to all of you. 

Something else that you all may consider is stop using toilet paper. when I used toilet paper my anus would become inflamed, my butt crack would crack and I would get fissures on my vagina. I now use a bidet that I bought off of Amazon for under $40 and dry off after using a towel. I don't have those issues anymore. Toilet paper has been bleached and treated with chemicals and every time you use the restroom you're exposing your sensitive areas to those chemicals. Some people just rinse off with a cup of water but I find that the bidet gets me sparkling clean after a BM, I will never go back to toilet paper!

Thank you for sharing.  I'm wondering what a vulva specialist would be able to do for any of us with LS.  How would their treatment plans be besides surgery, biopsys and laser.  It's hard to stay calm when we see parts of ourselves disappear. It is very stressful.  

 

I know I’m new to this horrible disease but can’t the doctor cut out the white patches or laser it or something ? 

I don't know if that would remedy the situation.  Sounds drastic, but who knows, it might be an option.  I don 't think you cut LS away.  It's from within.  it's an autoimmune issue.  I just want to know how far it can fuse.

Hi Becca,  I thought bath soaks were beneficial.  So confusing.  I''ve been lazy abaout soaking in a tub so that is why I use the washcloth.  No rubbing, just placing.  I too thought if we don't itch it won't spread or fuse, but surprise!!!!  Someone suggested witch hazel instead of the Clob to relieve itching.  I have bought everything that has been mentioned on LS on this site.  I have a cornucopia of products to choose from.  Maybe you need an alternative ointment if the Clob makes things worse.  It has been a life saver for me.  I keep getting lesions too and dono't know what that is about.  Sometimes I think we don't need cream on the lesions so I use Gold's Cornstarch powder to dry it.  I think it helps.

Everyday is different.

Thanks so much.   It is so helpful to hear from others who have been battling this disease. You know my GYN didn't seem concerned about this diagnosis.  She just wrote me a rx for Clob.  So when I did some research on my own, that is when I started freaking out !

In the old days, women just took the word of her Dr. now knowledge is power.  It may scare the hell out of you..but you need the truth to be able fight back.

Becca, my gyno was the same...I put it down to pure ignorance. 

For me, there was no mention of fusing, sexual dysfunction, cuts/sores...NADA. 

Women like my mother never questioned the word of their doctor.  They were held in high esteem, placed on a pedestal and revered like Gods!  but things have changed, it is not like that anymore and women need to realise that.

Becca, me again lol!  

I have just realised that most of us are dealing with TWO different types of doctors...

The first doctor will casually mention that you have  LS, tell you its no big deal and send you on your way with a prescription for LS Steroid cream...and that's it! 

The second doctor will look baffled, mention cancer, terrify you, book you in for a biopsy and then send you on your way with a prescription for LS Steroid cream. 

Guppy that’s exactly my experience and exactly why I said no to biopsy! There was no sign of cancer, he assured me! Then when I asked about treatment options I was told next step is biopsy! That’s not a treatment! Because there is no other treatment in their tool bag  except the steroid or hormone cream. 

I agree100%. 

Thanks Guppy,  so I tried some baking soda and coconut oil that someone here recommended.  Mixed it and put it on and OMG! Burned like crazy! 

How much baking soda do you guys use per coconut oil? Also how much in the after toilet spray?

I made a second call to my GYN this am. She had insisted I use the club but I am stopping it! Tried using less but the rash is still bright red and spreading down my backside. 

I am so freaked out! I can tell my hubby doesn’t really understand. 😞

LOL... you are absolutely right ! Mine was the first.. I dont know which one is worse !

Hi Becca...all of the suggestions and tips have to be used carefully and diluted in the right way.  

What you did was add something quite strong (baking soda) to an oil, and no wonder you burnt!! the oils are usually used on their own for lubrication and things like baking soda/borax are diluted in water, and NEVER mixed with an oil, it will take your skin off.  Oh well, I guess you won't do that again.  For your toilet spray you only need a pinch of baking soda in your water, that's all you use.

I had the same experience with the Clob, ages ago I used it on a 'paper cut' in the crack of my butt and the next day I had a rash from Hell running everywhere.  I only use the Clob for either the white plaques of skin or problems with my clitoris...it is brilliant for those areas and frankly I would be alarmed if I didnt have it.  But, you can use creams like Desitin which is a baby bottom cream to clear up sores etc.

I always give my husband an update on whats happening with my undercarriage because otherwise if you say nothing then they think everything is alright and then want sex.

 

Very SMART, PAT ! I love hearing the use of CRITICAL THINKING SKILLS!  Keep it up ladies! REMEMBER - WE are the best anecdotal EVIDENCE for what works and what doesn't listen to your sisters....

AND.... please do educate your doctors with kindness and love - they work hard...

Thanks so much for the explanation, Guppy/Katie.  The second i read what Becca had done my eyebrows went all the way up HUH? oh my gosh.... But i didn't have the experience to explain why not to mix oil with "water" - uh, baking soda; but it did remind me of sandpaper  for cleaning a rough surface.   

Yeah I won’t do that again! Lol.. I guess I was trying to attack it from all levels.. ha ha.  Some people have said that they’ve used neat essential oils directly and I knew that would hurt! So i diluted with water and oils. 

Hi Nancy, sometimes its easy to get muddled with whats what!

A vulvar specialist is better versed in LS than a general practicioner, gynecologist or dermatologist and therefore may be able to provide more or better care than a doctor, especially one who says it's no big deal and doesn't understand the extent of the symptoms. For many people LS is no big deal so the doctors aren't incorrect to say that. Each patient is different with how the condition affects her or him as well as other factors such as lifestyle, self education about the condition and how active the patient is in self treating the condition. So there may be situations where a specialist can provide additional symptom relief to patients and others where they can't.

Vulvar specialists can also diagnose if it is a different condition that one has that may require a bit of a different treatment. More importantly the vulvar specialist can help assess one for VIN (pre-cancerous cells) and provide treatment for VIN if necessary. 

Hi Jacqueline, 

Have you watched the Dr Goldstein webinar? It is a good place to get an understanding of LS. The white patches are surface symptoms of the condition that is deeper in the skin. Cutting out the patches will not address what is going on below. It can take up to a year to get under control so try not to get freaked out if things don't change over night. (I know, easier said than done!) Stress is something that many on here say worsens it and for myself that is the case. Sugar and alcohol also make it worse for me and others, but everyone is different. The forum here has lots of good information. Try to educate yourself about LS but also remember to be kind to yourself and take breaks (so you don't get too stressed out). 

Hi Elle, thanks for that , it is worrying after being recently  diagnosed. I didn’t know I had it until visit to dr for something else . I was very sore and splitting but another dr said it was normal after menapause to be dry , use cream . I’ve hardly had any itching , I didn’t really take any notice of it . I am so scared because I am singke and would really like to meet someone again as hate being on my own . How is that going to happen with this awful disease I have and no cure , I’m devastated . Apparently I have early stage LS . I don’t know if that means it’s easier to treat or not . I’m trying steroid ointment as prescribed . I’ll see if that works and maybe get some borax and baking soda for  baths . Which treatment gets rid of white patches best for you ? Some women  says  it heals , some don’t ! I’ll have a look at  Dr Goldstein , see if that helps shed some light . Thanks again . 

I've used baking soda bath in a Ritz pan and it really makes the red soreness feel a lot better. I was using Epsom salt bath but it seemed to burn me. I'm 69 years old and didn't know what I had till I went to the dr. And it really hadn't been fun. I ordered me some a homepatic creme off Amazon and it really helped alot.

If you are early stages you are in a good place! I had it for around 25-30 years before being diagnosed. Not all doctors have the same knowledge about LS. Learn about LS and you will be able to get the most out of your doctor visits. You will also be able to evaluate when it is time to look for another doctor. Sometimes dermatologists are better than gynecologists. I saw both types of doctors in my first year.

I only had white patches when I was in the worst of flares for the first six - eight months after diagnosis and I was extremely stressed due to the diagnosis and other major life events. For me, management is about diet. Reducing the sugar that I take into my body. I have other autoimmune and skin issues, which are also affected by my food intake. My basic diet is now very low gluten, low added sugar, some diary and lots of brown rice, lean meat, vegetables. Before stabilization I was very strict about gluten, dairy and sugar. 

I use an estrogen cream on the skin. It helps to "beef it up" and for me it stopped the tearing and splitting. Find yourself a moisturizer or two to use. I say two because some women have one and then find that they start reacting to it. I use emu oil as I find that it doesn't affect my clothing and it's less messy than some others making it easy to always have a small bottle in my bag for when I'm not at home. The steroid cream has a drying effect. I think it is helpful to start moisturizing now, even if you feel you don't need it, to help stave off a bad situation. 

?As for meeting someone, I completely understand the thought that this could make it impossible but a diagnosis doesn't make it impossible to find a committed, loving relationship. Of course everyone of us has a unique situation and so your sex life may need to be altered from what it was earlier in your life.

The year after my diagnosis it was very painful for me to sit down or walk and I didn't think I would ever be able to have sex again. I had just started to date someone and was worried that he would leave. Remember, as our bodies age, everybody has things that don't work the way they used to (LS or not) and so we need to get creative to get what we want and need. One needs to be able to talk to their partner about LS and sex. Certain activities or positions are better or may be more challenging than others because of the type of, or duration of friction and how that effects your LS. Or they may be off the table. It will require good communication on your part about sex and possibly some education for you or your partner regarding the inner clitoris. 

 

Thank you Elle , I appreciate your help 😄

I've tried everything under the sun as well.  The clob doesn't do it for.   It may work a day or two, but if I forget.... it's back to itching!   Hard to try to take crap to the bathroom with you while at work. 

I have used this in the past.  It's called Calmoseptine.   Amazon link:  https://www.amazon.com/Calmoseptine-Ointment-Tube-4-Ounce/dp/B0064FFP96/ref=sr_1_3_a_it?ie=UTF8&qid=1533587288&sr=8-3&keywords=calmoseptine&th=1

Once applied, it has an immediate cooling effect and then the cream acts as a barrier.   Love it.

Baths are a huge help to me.  What were you told about baths and LS?  

Oh, ElleF. Thanks for reminding us of some of Dr. Goldsteins' points. I didnt' remember that he said tht it takes a year to get LS under control.  well I'm coming up on 8 months now and feeling a bit like it's going that way,,,, knock on wood.  

Hi teewee, thanks for sharing.  

Thank you Elle for your information . I really appreciate it . It worries me so much . I’m scared for my future 😒

You're welcome. Don't be scared, it's not a death sentence! And the internet only shows you the worst of it. 

Nancy, does everyone get scar tissue, fusing and lose parts of themselves. Tonight I asked my GP to run a battery of tests like thryoid and vitamin deficiencies.  She will do Vitamin D, B-12 and thyroid but not for other deficiencies because she doesn't have anyone who can read the results.  I didn't get that at all.

Susan, that’s ridiculous! I went to my Gyn with Nancy’s list of tests and he told his nurse- whatever sge wants, give her. I had 5 vials of blood taken 7/20, tested all hormones, thyroid, vitamin deficiencies, congrsted Liver , etc. Also tested for other auro- immune dosorders. I will get results 8/17. You should be able to be tested for whatever you want! Maybe go to a different doc? Also allergy testing, particularily for different foods may be beneficial? 

Keep us updated. 😁