NATURAL REMEDY STARTS WORKING WITHIN A FEW DAYS

Hi Beverly, yes I was prescribed estradiol vaginally tabs. Also have breath cancer in the family and yes that's a concern. Estrogen makes my blood pressure shoot dangerously high so I stopped using it. As far as white patches, they're pretty rare for me but the rest is severe. Goid luck! I'm having good success with the olive oil and baking soda cleanse but as others have said, pat don't wipe.

Hope, If you stopped using the estrogen do you mean you stopped the estradiol? My BP is low, not sure how the estrogen will affect me, but I certainly don't need to add problems. Have to have the prescription compounded as my insurance will not cover the Estrace which cost several hundred dollars! Compounding will cost $78.

Did you go straight to olive oil or had you been using steroid cream? I'm supposed to use it for 6 weeks along with the hormone cream.

I go one better than not wiping or patting. Use the hair dryer on cool setting. Works well.

I found this site hoping for a solution to get back into my saddle so hats off to hot2trot. I had no intention of suggesting you change your protocol. In fact I strongly urge you to do exactly what your doctor prescribed then assess together how well you are responding. That's exactly what I did. I stopped using the hormones because of my reaction but I am very sensitive. Each if us needs to be carefully assessed as other conditions we have will influence treatment but we have to first establish that with baseline treatment. It all takes time. I was trying the olive oil in place if Vaseline as a protect ve measure between the cortisone and have tried without the cortisone but unfortunately am not having much success either way due to other conditions influencing my treatment. I sure wish you luck and everyone else with LS. Maybe someone will find a cure

I'm still trying to get my brain around the fact that I have it. Stopped having exams 3 years ago as PAP smears no longer necessary. But now THIS! Only symptom was on & off internal itch/burn. Doctor's theory was when something is happening externally it sometimes feels like it's internal (?) Has this been anyone else's experience?

Am using Triamcinolone Acetonide (steroid) Ointment (looks like cream to me) for 6 weeks. Waiting for hormone cream script to be filled. Have no idea how I will react to that. Tried it 20 years ago and was not good.

Hi, there are two different forms of itching with LS.  The first one is internal and its the worst, it feels like a horrible deep itch that you can never get relief from.  The other one is on the outside of your Vjay and thats more manageable with Sitz baths, creams etc.  

Do you know if that means that the inner skin is actually affected? Or that somehow just the nerves are affected?

According to what I've read people get this condition in different areas of the body. Is sounds to me almost like psoriasis. 

Good question and I have no idea.  As you say, It may be that the nerve endings that are affected.  I have only had that internal itch once, one weekend, and it was horrific.

I know that some women get LS rashes on their backs, legs etc. I also have oral lichen planus which at its worse is a terrible affliction, and it is obviously connected to my LS.

Just read only 1 in 5,000 people get it?! Guess that explains why the doctor seemed fascinated by it. Lucky us. And with no explanation of what really causes it. Though I have read low estrogen can...but maybe that's just a theory.

Wow sounds like me!! As many women do, I kept thinking I was having yeast infections because of very heavy long doses of antibiotics and trying to treat that with no success and finally said help what's wrong here lol. I would still be willing to try the hormone cream for a bit anyway but judging by past reactions that might not be a good thing. But I NEED some relief here. I need to get back on my horse . Looked at my bike the other day and thought no way!

Hyper immune system is the culprit many times. Immunosuppressants can be helpful in getting severe cases under control in some but not possible for me.

Depends on age and onset of menopause. There are natural changes internally with reduction of hormones. Systemically it is usually seen as thin, tissue-like skin. Just tears when you look at it it seems. Bleeding beneath the skin with the smallest bump. One day I pushed a metal door open with my forearm on a hot day and tore a looney sized piece of skin off. Yucky!! I carry steri- strips in my vehicles now. The symptoms experienced in the perineal area is because that's the effect on mucous membranes, hence the sloughing of tissue in the mouth as well. Nasty stuff this!

How long have you had it?

Mine is apparently caused by low estrogen. Went through menopause 20 years ago.

 

I don't believe those statistics to be honest.  I think it is more prevalent then you might think.  I think women keep it to themselves and don't always visit their doctor.

That's a possibility.  I am on not one, but two immune suppressant drugs and I still can get a mini flare-up. Humira and Plaquenil.

Well, it's been my assumption that the atrophy is probably prevalent, but the sclerosis is a whole new kettle of fish to me. 

Guppy mentions flare up, but I don't know what that entails. I've just had an internal itch that would come and go for 7 months. I was away from home and my wonderful health plan does not cover medical visits out of state. I recently got back and saw the 1st gyno available. Assumed she would identify the cause, thought it may be from the atrophy and figured I may have to bite the bullet with using the hormone cream. Was somewhat flabbergasted to hear LS. Had only ever heard  it mentioned on this site along with AV and really knew nothing about it.

Have used the steroid a few nights now. Can't say I notice any change. Hope to get the estrogen cream tomorrow. Maybe that will solve the sometimes itch?

Just read that Humira is used for psoriasis. I have been assuming the LS is a form of psoriasis only because of the mention of plaques. Has your doctor ever mentioned it was?

Yep plus excema and all the other autoimmune conditions. Just gets much worse when menopause doesn't leave us enough hormones to keep the mucous membranes moist and healthy. First really bad one for me was forty years ago. Downhill with treatment for all the other autoimmune conditions so its gone amok!! I wish you all luck with whatever gives you relief.

Hi, yes it is used for psoriasis, but I have IBD which is why I am on it, this is a hereditary disease that runs in my family. At this moment in time, no one knows much about LS because there is no research going on.  My Gyno is ok but like most others, not that knowledgeable really about LS, she never mentioned fusing at all!  I know I say it a lot, but really, you cannot totally trust your doctor's advice when it comes to LS, you have to become quite informed yourself.

Are you getting your information via the internet or other sources? I was impressed this latest doctor took the time to leave the exam room and come back with a book with photographs of the condition. Must say they rather freaked me out, particularly as the one she said mine most closely resembled covered a large figure 8 area. Awkward  though it is I did my best to see for myself once home, but I hardly saw any white areas. I am still somewhat baffled. A little late for regret that I didn't use the hormone cream 3 years ago. But, like you, I was less than convinced by that doctor re her assurance that estrogen in cream form is safe. Who or what do we believe? My sister followed whatever her doctor advised re HRT and ended up fighting breast cancer for years before finally giving up.

Hi, I have learned quite a bit about LS online, but really you learn stuff from experimenting on yourself, you find out what works and what doesn't work, but even then we all react differently so it is a bit of a slog getting to a good place whereby your not in any discomfort. 

It sounds like your white plaques of skin are faint, and the reason your doctor could see them quite clearly was because you had your butt under a strong lamp lol!  Some women have horrible white areas, super white, like chalk white, so your lucky.

When i left my Gyno with my diagnosis years ago I wasnt the slightest bit concerned and that was due to the fact that she hadnt told me anything really about LS, I had to do that for myself.

 

Try virgin olive oil it works

No one doctor knows everything about any condition nor are they expected to. Consider one travels to a foreign country and contracts a disease there. Their doctor will do the best they can to treat what they see. However if that person is lucky enough to be seen by a doctor from that area of the world.,they will recognize the condition immediately and treat it accordingly. If one is not satisfied with the service they're receiving, they are free to consult another doctor. Assuming one "knows all" by researching online is dangerous to overall health, however that's a free choice as well

Thanks, I tried the OO the day before yesterday, but I think I have too many things going on. Steroid cream, coconut oil, as of yesterday the estrogen cream. Pretty soon I'll  be sliding off whenever I try to sit 

So far I feel just the same. The itch that comes and goes. At least there was no negative reaction to the hormone cream (so far). That list of warnings the pharmacy gave me certainly doesn't make it sound all that safe, but I suppose everyone is trying to cover their rears. I go back to see the doctor July 11th and she will check for results from hormones and steroids. Maybe I should wait till then before adding anything new. If it starts to get better trying a bunch of things I won't know what is actually working.

Firstly, you can't always see a disease! so I'm not sure that's a good analogy, whereas with LS in 90% of cases women that have LS have the telltale white plaques of skin that present themselves in the shape of a butterfly!!...if a doctor cannot diagnose that then he needs to do a bit more research into what is happening outside his surgery door. 

I dont think anyone on this site said that they know all about LS....I don't know what you're talking about frankly.

Just out of interest how long have you had LS? 

40 yrs

No butterfly and very rarely plaques and very definitely LS

Hi Beverly 😉

My pharmacist also said low estrogen is one of the main causes of LS.

But due to my family history “ cancer” I was prescribed Estriol it’s different from the others and is the weakest. Even cancer patients have used this afterwards.

Its a compounded cream, mine is the lowest strength apply to labia & everywhere surrounding but not internally. It rejuvenates & helps healing process. Eventually you don’t use it steady but cycle off and on.

Its very very low in systemic measures. 

Hi Rose,

I remain  confused re the different types of hormones. Will ask the doctor for specifics when I see her on the 11th. I am using a compounded Estradiol cream...not Estriol. Don't know why she prescribed this and not the other. According to what I just read online:

"Estriol is the estrogen of pregnancy. ... Many physicians use estriol in conjunction with Estradiol in the form of Bi-est to help balance estrogen need in states of estrogen deficiency or imbalance. Estrone is the estrogen of menopause. It is a reactive, negative and miserable feeling estrogen."

I'd never even heard of estrone and have had no misery due to menopause, but had plenty with periods prior to it!

I have added a new twist to this itch situation. Neither the hormone cream nor the steroid were doing a thing for it after weeks of using them. Although the doctor said I had no infection and my itch was caused by what was happening outside the vagina I did have my doubts.

As I have posted here in other conversations, 20 years ago (around menopause) I had developed an non-specific infection and my gyno at the time absolutely refused to prescribe flagyl for me. I foolishly trusted that she knew what she was talking about and suffered terribly for 5 years. When I mentioned it to my GP he said he would gladly prescribe it for me as the body is full of thousands of unidentified bacteria and if I had success with flagyl before (I had) there was no reason not to use it again. That was the end of that infection and itch; I've not had a problem with itch in 20 years UNTIL the past 6 months.

Because the two creams (and coconut oil) I'm using have done nothing for the itch I called the doctor, spoke with the nurse, told her the itch was continuing and I wanted flagyl. The doctor was out, but the oncall doctor ordered it for me. I have taken the last of them today and the itch has been gone since the very 1st pill.

What this means re the AV and the LS I have absolutely NO idea. All I know is I am comfortable other than some perineum soreness which the doctor said was from the LS.

Sorry for the long post, but I do want other women to know about the possibility that itching can be the result of having an infection that is NOT detectable (hence nonspecific, I guess). I know I have AV, but I hadn't used the hormone cream till now because of my paranoia re my sister's cancer. As far as the LS is concerned I have no idea what this will mean for me in the future and I was not diagnosed till a few weeks ago, but it seems it did NOT cause the itch.

If I have any news after seeing the doctor I will report in.

I wish all you ladies luck and good health. Not easy getting old...as they say.

Beverly

Hi ??

It would definitely point to some other bacteria causing the itch if you reacted so well after the first pill, especially with your history with that medication. Not everything is from LS that’s for certain. 

I know that estriol is highest during pregnancy ect. It’s the weakest form and my pharmacist also said even young girls with fusing use it to unfuse.

i can’t touch other forms of estrogen due to family history, sorry to hear of your sisters struggle 😘 I’ve lost many in my family to cancer I know the pain. 

Thats why I’m using the estriol lowest dose only topically. its good after menopause to help the tissue regardless of having LS or not.

Thankfully you’ve found a solution independent of LS treatments to address this itch 🙌

Did you get the biopsy done to confirm LS? I did just four weeks ago.

I think getting older requires certain measures new to us but once you find them things settle out. Really there are so many young people with a variety of issues too so we’re all searching for balance just takes time cause we’re all different. 

Also I just started the Borax treatment for LS very promising.😉

 

Rose,

I am not the person who was waiting to get the biopsy. Maybe that was you? It's difficult keeping everyone straight!

My doctor said nothing about biopsy. The LS was diagnosed just through a visual exam.

Didn't know younger girls had fusing issues. That's awful. 

Now that the itch is gone I am detecting a slight burn externally. Wonder if the hormone cream is causing it? I was given it 20 years ago (by that doctor who wouldn't prescribe the flagyl) and I may have had the same reaction. I know I quickly stopped using it.

Not sure if a steroid would cause burning.  Will see the gyno in 5 days to discuss. The saga continues, but at least (fingers crossed) without the phantom seeming itch.

I guess the good news is without going to see the gyno because of the itch I wouldn't have found out about the LS (if that can be construed as good news). Other than some tenderness, I hadn't noticed much change in 3 years. Up until that point I used to see a gyno every year. Didn't start seeing a GP till I finally got insurance that covered it. These are the sorts of problems that occur without a national healthcare system and regular doctor visits.

Hello 👋 Beverly 

i was just curious if you got a biopsy that’s why I asked. Yes I had mine over four weeks ago.

Good thing doctor spotted your LS before it progressed to late stages.

Now that you have the itch firgure out 👍

Youll have to maybe go off the steroids to see if it’s causing the burning.

Only way is by eliminating one thing at a time and seeing if the burning

subsides. of course you’ll get more info in your doctors visit as well.

Post menopause can have various symptoms and not all are LS. It’s kinda a mixed bag so it takes time to address each one. 

You said doctor diagnosed by visual, so did you have white plagues and fusing or thin tissue?  Just wondering what he based it on.  I know you said very little discomfort apart from your itching which is in dependant of LS. 

My gyno said I have to go every 4 months for check up. It’s important because it can become precancerous ( not sure if I’m using the correct term) Thankfully you acquired insurance 😘

This gynecologist is new to me. I was going to have to wait too long to see the doctor I saw once 3 years ago after my previous gyno retired. The current doctor said she is a menopause specialist. She examined me under bright light for longer than I have ever experienced and concluded I have LS. I know I have had some thinning & shrinkage, but not any fusing that I am aware of. 

To my knowledge I am using the estradiol compounded cream to increase estrogen. She said low estrogen can cause LS (and obviously AV which I knew I had years ago). The hormone cream is only used at the vaginal opening. The steroid is used in the figure 8 area. I wouldn't think a steroid would cause burning as I thought it soothed skin problems.

She showed me a photo of an extremely white butterfly/ figure 8 pattern and said that was exactly what I had. I could see nothing at all when I got home so maybe she was only referring to the shape and not the whiteness.

More questions will be answered when I see her this coming week. I do hope the creams were as effective as the flagyl was

I have no idea what my next step will be. Maybe to use less of both creams. She did say to keep using coconut oil which I had been using all along, particularly this past year. I;m tired of all this goop, but I'm pretty sure I need to use some lubrication.

BTW I did use Multi-Gyn cream (in the spring before I returned home) which I sent for from the UK based on several recommendations from women on this site. It burned me terribly so I stopped using it. I brought it to the doctor and she said based on the ingredients she would never suggest someone with thin post menopausal skin use it.  

Will post what the gyno has to say next week.

B.

Hi 😌

She is a specialist so your in the right place for care.

i have heard of some people finding steroid cream too harsh and it stings.

Maybe a weaker one would bring better results.

it really sounds more like more like AV than LS , I understand she says you have both though. I’ve only heard LS folks always comment about having white plagues consistency not always fusing. You have neither. 

I have the white plagues and still the doc said you need a biopsy to really be certain what your dealing with & how to treat. It wouldn’t surprise me that many women get misdiagnosed with LS or AV with just a visual exam.

although seems a lot of people dont want a biopsy or doctors don’t offer.

Thats just my opinion, I’m glad your being cared for & hope you get more answers when you see the doc. 👍

As I said, I could see nothing; certainly nothing like the photo she showed me which I assume was an extreme case. Looked like someone had used white paint around the area in a figure 8 shape. 

I suspect she will tell me things have improved and to use the creams less often, but will know for sure on Wed. Not really sure how much more can be done anyway.

I seem to have solved the itch problem myself by calling and more or less demanding the Flagyl prescription when I spoke with an understanding nurse. The doctor had told me a problem outside can create what feels like an itch inside. Well, so far that seems not to be the case. The problem was inside.

Not sure what a biopsy would do for me. What treatment would be suggested other than these two creams?

Will post what her response is re the effects of the creams.

I’m uncertain what would be prescribed if a biopsy proved it wasn’t LS.

One reason is to see if it’s cancer, LS holds the potential risk of becoming cancerous, a low risk I believe. My left side labia minora is rather swollen so I was relieved after getting back my results it wasn’t cancer. 

I have pale whitish spots in the labia minora areas but no inflammation or itching. So structurally it looks different now. 

Yes keep us posted following your appointment. 😌👍

 

Hi, Beverley, a biopsy would just tell you what you already know...that you have LS...  except then you would have the added pain and swelling in an already tender area...nothing to gain really. 

The figure eight white plaques of skin aren't extreme cases, that's exactly how LS presents itself for most of us...its a shock to discover that especially if you haven't looked at your Vjay for a while.  

Like many I've had LS for years, but didn't know it at the time and was diagnosed in 2013.  I distinctly remember getting boils inside my Vjay and nobody had a clue what was going on.  This was grim because they were on the inside of my labia minora, and sometimes I had two or three!!  All this happened about twenty years ago..they eventually gave me antibiotics, at a low level which I took for about ten days and it cleared up..I can't remember which antibiotics they gave me.

I believe I contracted LS because I first contracted Oral Lichen Planus, that's the link for me. I had to have a biopsy on my tongue!! which was horrendous and if I had known that it was OLP I would have refused, but back in those days nobody really knew much about OLP and I must admit I had no idea that something as horrific as LS actually existed. 

Sometimes when I think of all the symptoms of LS and what it ultimately does to your Vagina it is hardly believable...in fact, when you tell people they can hardly believe it..not that I tell many as its not something you want to share really.

Let us know how you get on at your appointment.

Hi Beverly, I have recently been diagnosed with Vaginal Atrophy and LS. My Gynaecologist prescribed Estriol cream for the internal Atrophy twice a week, and Dermovate steroid cream for the LS. I can't cope with steroid cream it burns way too much, and to be honest I can't see any white patches anywhere either,,,,and very little itching, no sores /ulcers etc either, my symptoms were stinging / burning /redness down there, although the structure of vulva has altered at one side ! I didn'thave a clue until I physically looked......not something us ladies do every day is it !!!! Anyway, I now just apply EVOO several times daily to vulva area, and everything looks more pinkish, not as red as before. Cant wait to see what Gynaecologist has to say at next appt. Hope I don't get into trouble for abandoning the steroid cream !!It's a truly terrible debilitating condition for all us ladies.....hope someone can find a permanent cure

..SOON !!!!

Hi Moira, this conversation was a year and a half ago and I'd forgotten about it. So many are going on at once and often between the same people that the continuation often transpires on another thread. Dermovate in the UK is Clobetasol in the US, I believe. In my case I was initially prescribed a mid strength steroid which is Triamcinolone along with the hormone cream. I responded very well...until I didn't. As I was out of state for 5 months I could not follow up with my gyn, but ended up having to use the steroid constantly because of a buzzing feeling that never subsided. When I did see her again she confirmed that the LS had spread and put me on the Clob. She left the med group so I was left with no gyn. The Clob worked...until it didn't as the buzzing returned.

I found a dermatologist who dealt with gyn issues and was put on Tacrolimus and told to continue with the Clob & hormone cream.

I have been using coconut oil to moisturize for atrophy even before the LS. I also added Yin oil which has an olive oil base with herbal ingredients. Neither seemed to do anything other than moisturize.

I had been using the hormone cream nightly but noticed too much swelling so have cut back to x2 a week. Since using the Tac the Clob has begun burning so I went back to the mid strength. I am out of state again so am having to improvise and have decided to stop using the Tac as often as the derm prescribed as I have learned here that other women have been told to gradually use less.

If you have had success with just olive oil you are very fortunate. Some others have also have posted good results. When was your LS diagnosis and how long have you been treating it?

Hi, Bev...so, the Clob started burning. I wonder if this is because your LS cells are improving from the Tac? I've wondered if I would get to that point. I haven't, but do seem to be stable.

Happy New Year to you...hoping for a healthy one!!!

Snap, I have no idea what it means and am very tired of having to guess at this stuff. I never know if what I'm doing is the opposite of what I should be doing. Am rapidly losing faith in doctors because I follow their instructions re applying the meds but it only works only for a limited time. As of last week I've switched to your protocol. Tac x3, hormone x2, steroid x2.

I've been online tonight searching for specialists in FL. Slim pickings. Dr Coyle up in the northern part of the state who does laser and PRP according to his website. Treatments have to be a month apart. Another "specialist" in the Miami area but he only mentions hormones & steroids on his site. That's about it!

I find with docs that they know half of the equation...they know what meds do, what is dangerous. They don't know LS. There just isn't a) enough research and b) sharing of the research to the right people. So, my job is to share the right research with the docs who are willing to help.

My sense is that the steroids can become dangerous (need to be tapered down in strength and frequency) as the disease improves...but so far, my sense is that the tac (in the quantities we use) is not as dangerous...we can keep up with that without damaging the skin. My derm says...this is why she wants eyes on the skin every three mos...alternating her and GYN.

I'm definitely missing the eyes. My gyn went missing for 7 months. I tried to find another who knew about LS or one that was using PRP, but was unsuccessful. Two days before heading south I finally located the MIA gyn so wasn't able to see her. I did get to see the one dermatologist I could find that treated LS, but she is the one that put me on the ten times a week application of TAC...forever...and barely examined me. I just don't feel comfortable with that. So now it will be another 5 months before I get to see the recently found gyn up north. As FL has a very large aging population I can't believe there are no drs specializing in LS other than Coyle a day's drive from me.

Are you still applying the meds whether or not you see symptoms?