Lichen Sclerosis

Q: Hi, I was wondering if I can get the information on treating Lichen Sclerosus in the vulva. Supposedly it's a condition I'll have to live with the rest of my life but I don't want it to get worse and the only treatment I can get from the medical system is a cortisone cream.

Thanks for what info you can send.

 

A: Hello, I am glad you wrote. I would not accept it is something you will have to live with all your life. My research shows at this point it is a label for a set of symptoms with no known clear causes as far as the MDs are concerned. In this case, as others like it, I hear doctors prescribe some drug and say accept it will always be there and this will only be temporary help. Perhaps the case is different for you. Aside from the label given can you describe what you are experiencing, when and how long? Also did the person who diagnosed it offer a cause and explanation why he or she thinks you will have it for life?

A wonderful nourishing herb for those with skin conditions, especially the "mysterious" ones, is deep digging burdock root. The root tincture is what is used, 1-4 dropperfuls drunk in water a day. Similarly, the roots of Dandelion and Yellow Dock help some women.

If you are postmenopausal, Motherwort tincture, 25 drops in water drunk each morning, can help bring moisture and thickness to the vaginal walls.

Topically, you could try some herb infused oils. Again which herbs are best will be for you to explore. Plantain leaf oil is soothing for most, as is Calendula flower oil. Comfrey root oil is healing to damaged tissues.

Cortisone cream is the common response by doctors to relieve symptoms, which it can do successfully, but does nothing to nourish the health of the tissue. Long term it has its own irritating effects, like thinning tissues.

Comfrey leaves can be prepared as infusions and drunk to support skin health and elasticity. The infusions can also be used topically on the skin, daily as a sitz bath if vaginal or anal tissues are involved. You may wish to try this before the oils. Or if using the oils, do so with breaks in between so air can get to your skin.

The above suggestions take steps not only to help soothe the discomfort, but add to long-term nourishment of the tissues to keep this from returning.

A final thought involves your diet and digestive health. It has been found that some dry itchy heated skin conditions respond well to increased good quality fats in the diet, and for some an increase in water. But the latter without the former may not be enough. There is also speculation that lichen sclerosis is an autoimmune response. Some have found that many autoimmune conditions abate when digestive health is increased. This can be done with the root tinctures mentioned above - burdock, yellow dock or dandelion - and yogurt or other fermented foods to help increase gut flora.

Simply, focus on the skin's overall health and all that supports it, internally, externally, with thoughts, actions, exercise, and fresh air and sun.

I am happy to dialogue with you further on it, please let me know how I can help.

Blessings,
Karen Joy
wisewoman@herbshealing.com
www.wisewomanweb.com

 

Q: Hi Karen,

your reply was warming (and informative), also your prompt response was much appreciated,
thanks.

[response in below, with earlier note in italics]

Hello, I am glad you wrote. I would not accept it is something you will have to live with all your life.
Good to hear.

My research shows at this point it is a label for a set of symptoms with no known clear causes as far as the MDs are concerned. In this case, as others like it, I hear doctors prescribe some drug and say accept it will always be there and this will only be temporary help. Perhaps the case is different for you. Aside from the label given can you describe what you are experiencing, when and how long?
The short version is that for health reasons I was on a serious cleanse (Gerson) which included doing 4-8 enemas a day. I did this for about a year ( I know that many enemas and for so long isn't my best option), unfortunately about 90% of the time fecal water from the enemas would get into my vulva. The specialist say that isn't the cause of my Lichen Sc. but I disagree. About a few months after I started the enemas I started to get some itching in my vulva area. The gyno couldn't see anything so told me to do the basic stuff (cotton undies, mild soap...), about 6 months after that she finally started to see growth so she put me on the steroid, and told me what I most likely have. I saw a different gyno who took a biopsy and confirmed I had Lichen Sc.

It's now about 2 years since the itching first started, once the bacteria builds (on a daily basis) sometimes my skin acts up. My natural skin color was brown since the disease it's now pink (fortunately there is still some brown area where there wasn't an itching problem). About 1/2 and 1/2 coloring, the itching was around the inner lips and the clitoris. My inner lips look smaller than they use to be and every time I see or feel them they are always swollen. The itching is now mild and periodic, before it was severe and often. I change my underwear 2-3 times a day and rince 1-2 times a day, both those actions help keep the itching at bay. I believe sexual friction exasperates the itching (but I'm not sure as I haven't been sexual for a couple of years)

Also did the person who diagnosed it offer a cause and explanation why he or she thinks you will have it for life?
No, the specialist (gyno at the woman's health clinic, the people are very good there but are traditional) basically just said the way to manage the symptoms is to apply the cream often (gave more detailed instructions) until symptoms go away, then for the rest of my life, 2 times a week apply a small pea size quantity, and have a yearly check up. In doing so it will cause the deterioration/damage to stop, and keep my vulva skin functioning well, that has been their experience. Everyone else is saying the cream will cause thinning of the skin and by the time I'm 60 my vulva will look and feel like it's 80 or 90.

A wonderful nourishing herb for those with skin conditions, especially the "mysterious" ones, is deep digging burdock root. The root tincture is what is used, 1-4 dropperfuls drunk in water a day. Similarly, the roots of Dandelion and Yellow Dock help some women.
I might hold off on the burdock root as it seems that when I eat it it upsets my digestive system and my vulva sometimes itches a little for a very short period of time. I have dandelion tincture I will start using that

If you are postmenopausal, Motherwort tincture, 25 drops in water drunk each morning, can help bring moisture and thickness to the vaginal walls.
No not yet, but lack of moisture in my body is one long term complaints-my body is very dry and has been for 15 years. I believe it's due to a digestive problem

Topically, you could try some herb infused oils. Again which herbs are best will be for you to explore. Plantain leaf oil is soothing for most, as is Calendula flower oil. Comfrey root oil is healing to damaged tissues.
I will experiment

Cortisone cream is the common response by doctors to relieve symptoms, which it can do successfully, but does nothing to nourish the health of the tissue. Long term it has its own irritating effects, like thinning tissues.

Comfrey leaves can be prepared as infusions and drunk to support skin health and elasticity. The infusions can also be used topically on the skin, daily as a sitz bath if vaginal or anal tissues are involved. You may wish to try this before the oils. Or if using the oils, do so with breaks in between so air can get to your skin.
Good to know. How about sunlight, will periodically exposing my vulva for short periods of sunlight help. I tried it a few times it felt good, but doesn't mean it is in my best interest. I will be by myself for 5 months in the middle of the woods, with a restriction on my water use, so cleaning well and frequent sitz baths is/will be challenging.

The above suggestions take steps not only to help soothe the discomfort, but add to long-term nourishment of the tissues to keep this from returning.

A final thought involves your diet and digestive health. It has been found that some dry itchy heated skin conditions respond well to increased good quality fats in the diet, and for some an increase in water. But the latter without the former may not be enough. There is also speculation that lichen sclerosis is an autoimmune response. Some have found that many autoimmune conditions abate when digestive health is increased. This can be done with the root tinctures mentioned above - burdock, yellow dock or dandelion - and yogurt or other fermented foods to help increase gut flora.
I am working on my digestive problems. I also have a sluggish liver and I am starting to take some pills that seem to be helping ( I believe they are helping because my body bloating seems to be abating).

Simply, focus on the skin's overall health and all that supports it, internally, externally, with thoughts, actions, exercise, and fresh air and sun.

I am happy to dialogue with you further on it, please let me know how I can help.
Thanks again, and blessings to you.

 

A: You are welcome, write any time....

Yes, with the damage you did to your intestines there must be great damage to your intestinal flora. And if you feel you had digestive problems before this, it likely only got worse. An imbalance can cause overgrowth, as well, I agree with you fecal water in your vagina will cause problem, and daily for a year! Yes, please please do take Dandelion root tincture, 10-20 drops in water with each meal or about 3 times a day. And please please be kind to your digestive system function and allow it a rest. Nourish with probiotics and yogurt if possible. The Dandelion tincture can help with digestion, therefore important absorption, and nourish your liver. What is in the pills you are starting to take? If you wish to share.

I am glad you will experiment with the suggestions. And yes sun sounds good to me, but in small amounts to damaged tissue.

If you will be somewhere where water use is restricted, yet you have not yet found other options for relief, I invite you to consider if this trip is necessary right now. Your health and happiness are treasures. You are a beautiful loved person, please continue to give yourself the same value love and kindness, as I hear you do in your emails to me :)

much love,
Karen Joy

Comments

[Debbie]

I am sooo happy and sad at the same time to hear that there are other people with this horrible problem out there. i feel like it is only me so much of the time. I have the cortizone cream, lidocaine and other meds. Thr red, raw itchyness that comes is so bad. I use baking soda in my bath, nothing else. I am being treated for IBS, the 2 together is a nightmare. I am thinking of probiotics, I was told that the yogurt type can be inserted. I have had this for nine years, for 4 of them not one doctor could tell me what I had. Finally, I met a doctor who suggested an ablation to eliminate some friction during that time of the month, it did help and is nice not to have to deal with that also. I am struggling with this. It is scary and takes away a huge part of my marriage. I am trying to find alternative treatments.

good-luck to all

[Deliliah Jackson]

I was diagnosed with LS approximately 2 years ago. I have had a couple of flare-ups that lasted a little while but this one is lasting the longest, about a month now. I was also put on steroid creams and told this was something I would have to live with for the rest of my life. I am so horribly depressed about this. I am 53 years old and still very sexually active. I am very afraid that my husband will be affected by this to the point of divorce even though he says that it would never happen. So far I have only had itching and irritation, no white spots. Intercourse hurts and burns. Any advice on herbs, etc. would be greatly appreciated. I have heard of the neema oil and the green tea. I would love some feedback from anyone that has had success with these kind of things. This last flare-up started during a time when I was at the most stressed time of my life and had just started a colon cleanse regime. Again any feedback would be welcome.

[Deliliah]

Adding to my first comment, what are some ways to really boost my immune system?

[KarenJoy]

Debbie, I am so glad you find the sisterhood here, knowing you are not alone. Know that labels can be relieving and limiting at the same time!

IBS and vaginal troubles often go hand in hand as both intestinal and vaginal systems are wonderful ecosystems. An overgrowth of something can occur in either.

Yes, yogurt is great!! Eat spoonfuls of it through the day, put it around the labia and up inside the vagina with your fingers. Sit with it for a bit then wipe off gently. There is no worry about a little left on.

lots of love to you!!
Karen Joy

~~~~~~~~~~~~~~~~~~~~

Delilah you do not need to live with this the rest of your life! You can love and nourish your vaginal health and feel wonderful. As we age we change, this is natural, but we can still feel wonderful even if different.

Just like Debbie above your intestinal system is disrupted by your "cleansing" of your colon. This disrupts ecosystems through your whole body.

As we go through menopause our estrogen levels drops so our vaginal tissues thin a bit and are not as moist and receptive to intercourse as they were prior to menopause.

Many menopausal women have incredible sex lives!! Sex is far more than intercourse AND there are things to help intercourse be more enjoyable. It should never be painful for anyone involved. Would you expect your husband to have sex with you if it caused him pain? Might you instead find out how you can help heal his tender tissues and how you both can be intimate in ways that bring you both only pleasure?

It is part of partnerships that last some time, that we understand change is a part of life and learn how to embrace and flow with these changes. What you would likely offer your husband if the roles were reversed is what you have every right to ask of him now.

Here are some ideas to help love your tender tissues (scroll down): http://www.susunweed.com/herbal_ezine/March08/grandmother.htm
And here are some ideas to help you nourish your immune system: http://www.susunweed.com/Article_Strengthen_Your_Immune_System.htm

with love,
Karen Joy

[Debbie]

Karen,
Thank you for your kind words.
Iguess I should tell eveyone a little more about my situation. I had a very bad delivery with my 2nd child. As a result my episiotomy was tearing open after a year still. I was flaring up and they were telling me that I was having repeat yeast infections. I went to doctor after doctor, no one could help me. Fianally, my own gyno told me that while i delivered my 2nd, The doctor on call had stitched up all of my nerve endingd with the #4 extended episiotomy she had given me.They procedded to tell me that I needed to have my episiotomy redone. Well, at that time my baby, had to have complete open heart surgery. I quickly agreed to the revision. What a mistake! I have been left with so much scar tissue some of my new doctors say that they have only seen something this bad in 3rd world countries. They proceeded to cut through my rectal muscles and say that the wall between my vagina and rectum is now like a piece of tissue paper. On top of that they cut away all of the tissue between my vagina and rectum. There is no space between them at all. I developed lichen schlerosis, pelvic floor dysfunction and major stomach problems. I have seen many doctors, and I have been called everything from frigid to only being concerned with what I look like down there, i was also told that the revision was done so that my husband would have better access to me. I see a womans thearapist who works on my pelvic floor dysfunction. She informs me that my muscles in the whole area including my hips, thighs and abs are in a state of shock. I have a great gyno who deals with womens problems and I have begun to see a thearapist who is hypmotising me for my stomach issues. I have also just been taken off of all wheat and gluten. What a nightmare, I feel as if we live in this very sexual world and i am afraid to have sex at all because of the pain and flare-ups. I have a wonderful, caring husband, but I to also know that he is not having the sex life that he should be. I wish that someone could help all of us with these horrible problems. Why isn't there more research done on these issues. I am looking for alternative treatments. I cannot even think of living like this for the rest of my life, and the outcomes that I hear about scare me so much. Somedays I just sit and cry, usually that is during a bad flareup. I am trying the whole body thing. I am begining to feel that all of my symptoms are related. Exercise, yoga, healthy eating, probiotics and whatever else I can find. Something out there somewhere surely can help us all. It has been 9 years for me and I am tired, but I still will fight for answers.
thanks for your time,

Debbie

[Deliliah]

Karen,
Thank you so much for your input. The thing that I am confused about is that I have very little itching on the outside but am practically raw on the inside. It's almost as if I have tiny little blisters or bumps that are raw. I was told by my Gyn that it is a part of the LS. What can I do about this?

[Debbie]

Deliliah,
try baking soda baths, they soothe the skin and help with the redness. Also for intercourse, my gyno suggested oil, like olive or regular wesson as lubrication. It really does help with the friction. she says if we can eat and cook with it we can also use it there. Also, she insists that I use A&D ointment, just enough so that it keeps moisture away during the day and prevents to much rubbing on underclothes, alos aloe is great. I have had this for 9 years, the baking soda baths are great. i can get in the tub bright red and get out and feel better and i always lose some of that redness.

ggod luck
hope you get good results

Debbie

[KarenJoy]

Debbie and Delilah, yes any oil we would eat would be great down there to help the enjoyment --- however i would never eat or cook with wesson :) And A&D is made largely from petroleum, so I would never put it on my body, especially there. My favorite is coconut oil!! - delicious, slippery and lighter than others like olive oil.

Delilah is herpes ruled out?

Debbie, hello, thank you for sharing so much, so intimately. So many women have been treated so unkindly, mostly, in my opinion, out of ignorance. You need to know what is true about you. I encourage you to find a statement or a few statements that are affirming and say and write them every day over and over as much as you can. Set a schedule if you need.

Are there any of the ideas in the article I linked earlier that you have tried or will try?

lots of love,
Karen Joy

[Deliliah]

Herpes has been ruled out. I did have a yeast infection and my gyn gave me medication for it. During the time I was using it everything felt much better. Have been off of the medication for 4 days now and the horrible redness and burning inside is back so bad that being intimate is absolutely impossible. Have not tried the soda in the bath yet, maybe it will help. I feel as if I have lost a very big part of being a woman.

[Deliliah]

This is the most serious flare-up I have ever had. Does stress play a big part in this and how often do these kind of flare-ups occur and how long do they last? I just graduated from college, how am I going to be able to work like this? Do women that have LS work and have normal lives. Did I go through 4 years of college for nothing? I can't live like this.

[Deliliah]

I have heard that Perrins cream has had success with LS leisons. Please give me some feedback on this cream. The symptoms I have are more itching and burning. Would this cream be O.K. to use.

[KarenJoy]

Delilah, this sounds so miserable for you!!!

Please know that lichen sclerosis is a label for what you are experiencing in the moment, it is not a disease in that you have it indefinitely. When going through what you are going through, yes, it is hard for people to even function. This is such an integral and intimate part of us, and so central to everyday life it is difficult to impossible to just set it aside and go on.

If you are using anti-inflammatories they can bring great relief while using them, but then you can get even worse when off them, since they work by bypassing your normal healthy functions.

Consider us and many women reading this as a support. So many suffer silently. Too many think they will have to live with it forever, that it is a curse of womanhood, or that it is a result of some failing on their part. In a culture where we can share intimately and openly, with deep care and respect for this magical part of who we are, this, if it happens at all, would simply be a brief moment in time.

Karen Joy

[Deliliah]

Karen,

Thank you for the support. If I understand you correctly you're saying this flare-up will eventually pass. I hope that is what you are saying.

[ItchingMommy]

hello ladies:) i'm 35 and have been diagnosed with Ls for about 5 yrs now. The only thing that took it away was pregnancy and breastfeeding. As my 3rd was weaning i started itching and then the cuts came along and the burning, etc. It took my gyno 6mths to figure it out and he realized it was LS. I used Clobetasol and estrogen cream - they worked for a bit, but never took it away for good. I then got pregnant again and suddenly it all disappeared. My dd is just now weaning(she's 3.5 yrs)and the LS has returned with a vengeance! I'm wondering if there is a connection between the hormones and the LS - I know estrogen strengthens the tissue, but does it also bring on flares?
Also - one thing that helps me is tea tree oil...it really soothes....but it can't be straight or it will burn too much - it is mixed with beeswax and mineral oil to tone it down.
Does anyone else have a yellowy discharge? I always have that, but after being swabbed and cultured it ends up being nothing(according to the doc)...I am having such a horrible flare-up right now and a very large cut - it is so sore and I just want you all to know that I get to that pt where I cry too and just want to sleep the pain away...
I have heard that LS is found on women who have been traumatized in that area either thru episiotomies or some other thing...I had a medio-lateral epi with my first child who also had open-heart surgery(she later died) so there is not just physical trauma but emotional trauma associated with this area for me.
Sorry for all the info at once, but I'm trying to write down everything I thought of as i was reading the other posts - thank you for this forum - i hope we can all figure out something that works!

[Deliliah]

I can't help but think that this is related to hormones. Pregnancy, menopause, puberty are all very hormone related. LS disappears during pregnancy, if LS is diagnosed before puberty it most always disappears when the child goes through puberty, LS usually hits post-menopause. All of the things listed above are extreme changes in hormones. If only someone somewhere would devote more research to finding exactly what causes this. In one of the earlier posts someone wrote that their mother was Korean and had give her some type of leaves to use that had a very good outcome. Please try to find out what type of leaf this is and where we can get it. I have asked before but have not received an answer from anyone. How long do these flare-ups usually last. This is the first serious one I have had. I believe it was brought on by extreme stress. Also, anyone out there that has LS and is working, please let me know how you get through the day with this.

[KarenJoy]

Words are powerful and telling. Labels can be limiting.

The words I often hear when reading the medical literature on LS are "disease" and "chronic". Disease has quite an ominous feeling to it - paired with chronic we often assume one we have it it will always be there or there will always be threat of return.

This label is given based on symptoms. There is no bacteria, fungus, virus or such to identify. Even when a biopsy is taken it is to rule out other concerns (not sure which) or to look more closely at how the skin looks. Ten people with this label may have different presentations and even different causes.

Even in the medical field identification is under some dispute, and cause is considered unknown. Paired then with "chronic disease" all that is hoped for in that viewpoint is symptom suppression.

None of this needs to be our truth.

A label is like a snapshot. You may be having a great beautiful day but the moment the camera clicked you were wincing at the sun. This does not represent who you are. Many of use may have had moments where we could carry this diagnosis based on symptoms described and observed, but since we did not ask for a label in that moment we move on to the next. I suspect it carries the label chronic for two reasons - by the time someone goes to have it looked at it has gone on for some time, so takes some time to improve and because the medical field's choice of symptom suppression does not nourish health and true benefits are never truly realized.

I offer this view to help any who feels they are stuck in a hole of chronic disease to see some light - there is another way to view the moment. This does not of course change the incredible discomfort some are feeling and the concurrent disruption of many aspects of daily life. For this community is so vital - knowing we are not alone.

The word "flareups" to me also suggest this "chronic" condition, one we have to accept having the rest of our life, and one we need to suppress quickly. It gives me an image of a fire that erupts mysteriously, we put out with an extinguisher, and stand waiting for the next eruption, sure it will happen, not knowing when or why.

Instead we can shift focus from the "disease" to our selves, our bodies, our vaginas, our health. We can focus on how to nourish this vaginal health. This of course may bring its own debate, but much more heartening discussion likely.

There is debate about cause in the medical community. I suspect this is in part because 10 women presenting with similar descriptions have different causes. Again perhaps more time and energy can be put into how to nourish overall vaginal health. Not to discard the search for "why" entirely, but accept the possible unknown.

So Delilah and ItchingMommy (I suppose once relieved you would need to change your name, perhaps you would like to do it preemtively :)) have either of you tried the yogurt of herbal oils or sitz baths I have mentioned previously? I wonder why the search for the leaf from abroad when other plants have already been suggested and shown to work for some.

with love,
Karen Joy

[jill francis]

i have read the above and feel i know exactly what they are going through. i have suffered with ls for 15 years since having a hysterectomy. at the moment the itching, stinging and pain are unbearable and i'm waiting to go back to the vulva clinic, i have an op.to put collagen into the bladder to help incontinence on aug 22nd i,m worried that maybe it won't be able to go ahead and if it does how sore is it going to be after. from reading above i'm going to try a bath with baking soda and buy the root of dandelion. i'm so pleased to have found this site healing wise i'm hoping it will help me. thank you so much.

[jill francis]

please could you tell me what a sitz bath is please.thankyou.

[Debbie]

Hello all,
i have been living with this for 9 years. My sob story is above. I have been having a really bad flare up also. It has been very hot out here in az. So, i decided to try and baby the area so to speak. I have been changing my underwear 2-3 times a day, baking soda bath every night and using the clobetasol 2-3 times lightly a day. No more dryer sheets, and i am trying the emu oil. I was told I will have this forever, and with all the other problems i have in that area I really need to find more answers. I feel that the tissues need to be treated so that they can heal and become healthy. I will be going to see a homeopathic doctor and see if we can figure something out. I cry alot. This has sent my life spiraling. I feel as if I am no longer a woman. I have really bad days and yes i have had days where I am in so much pain I can't sit down at work. It is horrible. I am looking for alternative anything. Most of the time I feel so alone with this. My husband tries, but, lets face it men cannot understand. I am scrared of the potential outcome. i have been through so much, They have left me with so much scare tissue and cut so much of me away i am terrified. Then to live with he pain, burning itching it is very hard. I will keep looking, this needs more attention brought to it. i try to focus on my beautiful children and be happy in the moment. It is a struggle everyday. I am so happy I hve found this site, I do not feel as alone anymore. Lets get some answers!
take care
Debbie

[KarenJoy]

Jill, hello, so wonderful to have you hear! A sitz bath oddly enough is a small bath you sit in, named after, I believe, German for "to sit" sitzen.

it is a small tub made of whatever you have, like a dish tub for some, with the liquid and herbs or whatever you put in it, that you sit in - used for hemmorhoids, vaginal troubles, and such.

~~~~~~~~~

Debbie thank you for sharing so other know they are not alone.

~~~~~~~~~

Everyone, do know there are answers, lots of them above, that may have not been tried by you, that really really might work. It is great to see the positive in our lives, AND it is great to worship and honor the sacredness of our vaginas!

[Nan Carr]

When my LS first began, I was 41 years old. I thought it was a gnarly yeast infection. I tripled up my acidophilus capsules and tried a few holistic remedies, all to no avail. For the next four years I was plagued by intense itching, burning, rawness, stinging, and all-around misery. I finally made an appointment to see my ob/gyn and find out what in the world was going on in my nether regions.
I laid down on the gurney, my sock feet in the stirrups and described in vivid detail the anguish I had been enduring for so long. He prepped me by pouring vinegar all over my genitalia, warning me up front that it would burn, but I scoffed and said, “It can’t possibly burn more than it does already.”
I was wrong.
Since I was in a major flare-up at the time from bow to stern, it burned like the fires of hell. I’m certain my hands were frozen into claws from gripping the gurney so tightly. When all was said and done, he informed me it was lichen sclerosis, a rare condition about which he knew absolutely nothing, other than the fact that it was autoimmune, ideopathic, and has no known cure, which is their way of saying, “We don’t know what in the heck it is, how you got it, or what to do about it.” So they send you away with testosterone cream, or something equally useless and that’s that.
I went home with testosterone and cortisone cream. I threw the testosterone into the trash (do I really need extra body hair?) and used the other for a few weeks, months, years.....who knows? In addition to that I have tried every thing under the sun for relief over the last ten years. I am now 55. I’ve tried zinc oxide, A&D ointment, Gold Bond medicated cream (Ouch), baby powder, olive oil, almond oil, essential oils, vagisil, and so on and so on and scooby dooby doo. Some worked for a week or so, others might give me a month or two in remission, but the LS is stubborn and will not be denied. Like the rubber ball of song, it just keeps bouncing back to me. The last year of my life has been one of no remissions.
Sigh
For the first seven or eight years, I was frustrated, angry, resentful, sad and all things negative. The last seven years I have come to accept it and just keep trying to stay positive and hopeful. Stress and anger exacerbate it. Self-pity doesn’t help–I know that from experience.
Today I found this website–Yay! How wonderful to hear someone speaking my language. In this matter of our parts, take heart ladies, we are not alone. I am not alone. I feel your angst. I hear your frustration. Let us not give up hope.
I bought a Sitz bath today for experimenting and plan on trying Karen’s yogurt soak. I also purchased some wonderful balm last week–organic and all herbilicious. It’s called Angel Baby Bottom Balm. It’s natural. It’s soothing and it helps provide some relief.
Please forgive the length of this post–I was bursting to let it all out. You should have seen it before I edited it though.
Thank you Karen. I send you bountiful blessings for your empathy, wisdom, and guidance.

[astaru]

I just came across this website while doing a little bit of research online. I started experiencing some of the symptoms described above recently, but have not had any tests or confirmations yet. I have been going through a few stressful months dealing with exams, deadlines and a rather intense relationship. It's somehow fascinating to see how the bodies warn us about wrong choices. I am now ready to change all that and find more peace and balance in my life. I just wanted to share a couple of things that my mom suggested that helps with me with the itching (I've only been using them for under a week) - Calendula flower oil mentioned above and propolis tincture (if you're not allergic to bee products). I found a few articles on propolis being the answer to others.

Karen - thank you so much. What a beautiful and calming website. Just what I needed.

[Casey]

Hi Karen,

I have some good news to report. After nearly a year of battling this problem, I have now been symptom free for about a month and a half. I think this truly could be the end of it all! I thought I would detail what worked for me with hope that it may help others. I'll try and answer your questions as I go:

Summary of Symptoms:
non-itchy, excessive white discharge. Erosive patches near vaginal opening appearing about 1 day after intercourse. Patches start out whitish and then become erosive; similar to a blister but w/o any fluid or crusting (not herpes). Burning after partner ejaculates. Also possibly related: hives.

Proposed diagnosis by doctor (in order):
Yeast
BV
Herpes (blood and culture test neg)
Strep B
Lichen Sclerosis or Erosive Lichen Planus
Vulva atrophy (from low estrogen)

Meds that did not work:
Diflucan, Oral antibiotics for BV, Ampecillin, steroid cream. Vaginal dryness oil from Avena botanicals.

Remedies that provided some relief(in order of me trying them):

-Yogurt suppository (relieved irritation but did not prevent problem from reoccurring)

-probiotics capsule suppository (mixed with aloe and relieved irritation dramatically but did not prevent problem from reoccurring)

-Aloe (relieved irritation but did not prevent problem from reoccurring)

-oral probiotic pill (reduced severity but did not prevent problem from reoccurring. Had to switch to high potency for results. Also tried coconut yogurt since I am sensitive to dairy. My digestion is good except when I have dairy!)

-Aloe (relieved irritation but did not prevent problem from reoccurring)

-Peroxide & Water rinse; about 1:3 (this is the only thing that initially eliminated discharge but it kept coming back after discontinuing use after 7 days)

-only water near vulva; no soap.

Meds & Remedies that I believe helped me kick the problem:

-quit coffee

-quit using sunless tanner

-1/4 ounce Usnea tincture / day for 10 days along with H2O2 rinse every day for 10 days (Since having done this I have been discharge free for almost 3 months. For a couple months the erosive tissue and white skin patches seemed a little better but they did still keep coming back. Still I see this treatment as a turning point.)

Started all the below together after the Usena and H2O2:

-Adopted some Ayurvedic eating habits for Pitta; i.e no spicy food

-Took triphala herb and "pitta blend"

-Sitz bath once a day from Avena botanicals with comfrey, yarrow, calendula & a few other such herbs.

-Epsom salt sitz shortly after intercourse.

-"Yoni cream" from Avena botanicals during intercourse - especially if intercourse was repeated 2 days in a row (a natural lubricant w/o any herbs).

-Estrace estrogen cream on the vulva 4X a week for 2 weeks and then 2X a week for 4 weeks.

So as I said, since doing the above, I have now been completely symptom free for more than a month and without discharge for about 3 months. Even the hives I had been getting have lessened dramatically. My vulva skin really seems healed and is now perfectly calm and without irritation after intercourse. Until now, that has never really happened.

Here are a few things that I think contributed to my problem:

-lots of antibiotics (made me vomit and disrupted flora)

-diflucan (gave me a rash on my face)

-sunless tanner (immune system overload? gave me a rash but I used it anyway!)

-coffee (bad for digestion)

-D&C procedure. After any pregnancy estrogen plummets and so some new moms end up using estrogen cream to help prevent vaginal tissues from becoming to thin. In desperation to time my period to my upcoming honeymoon, after my procedure I used Birth Control Pills. When I stopped using them this problem first arose. I think my own hormonal system never had a chance to catch up. Furthermore, I've read that Diflucan has caused estrogen levels to plummet in animals. So it seems that low estrogen levels combined with a bacterial infection wreaked havoc on my vulva skin. I'm trying to decide now if I want to have my hormone levels tested to see if they are back on track...

Well with this super long post, I certainly hope I can help someone out there. This horrible problem has truly been a living nightmare and I wouldn't want anyone to have to suffer as long as I have. I'll try and report back to let the forum know how I am doing. Hopefully this will all be a distant memory!

[Cynthia]

Hi

Has anyone heard if aloe gel or tea tree oil and
wheatgrass and wheat grass juice being
effective Or may have tried them. I am in constant pain and itching and the steroid cream is not helping after a month of using it. The burning is making me so frustrated. All the things mentioned above as topical use and internal can be found at a particular store or market. I know this may sound silly but I am not all that familiar with them and would not be sure exactly where I could go and purchase them.
I am sleep deprived and can't seem to find a way to deal I have even broke down into tears. Any info would be helpful and greatly appreciated.

Cynthia

[Pauline Wanstall]

Seven years ago I had three doses of a broad spectrum anti biotic for a chest infection. Shortly afterwards I found that I had the most awful itching in the vulva area especially at night. I went to the doctor who prescribed a steroid cream. She said that if the cream worked on the itching it meant I had LS. I donn't have any other symptoms of LS though. No sores, lesions, pain during sex etc. I am now sick of the whole thing and I have decided that the cream doesn't work anyway. I have started mixing acidophilus powder from capsules into plain live yoghurt and swabbing the area several times a day. I am also taking the capsules along with added vitamin C tablets. I am also avoiding sugar and yeast. I still itch sometimes at night and very little during the day but I don't think its nearly as bad as it was at first. I don't think I actually have LS at all!! More likely a persistant yeast infection. My husband had a yeast infection(Candida) for years and cured it with diet and acidophilis. Anyone else tried this method and has it succeeded?