Lichen Sclersis or Sclerosus?

Hello Emily and welcome,

Please read my paper, A Natural Remedy for Lichen Sclerosis (same as sclerosus), which is posted in the Village library. It may give you a few insights. I researched the disease for several years and one thing I found interesting in the earliest writings on the subject was that LS women were described as “nervous” types. Nervousness (or driven or type A or whatever) translates as stress, which means adrenal output. Glucocorticoids keep more estrogen in the system by increasing aromatase - the enzyme that converts testosterone to estradiol. Have a look and maybe you will find that red clover tea helps you as well.

Wishing you well,

Christine

Hi Emily

I am coming to this whole red clover thing from the perspective of dermatitis that started early in perimenopause. Red clover has stopped the spread of my dermatitis and is slowly reining it in, first on the edges, where it had spread to, but it had not been there as long as the centre bits. I don't have LS.

My background is in agriculture. High oestrogen clovers, eg red clover, and some of the early subterranean clover cultivars played havoc with the reproductive capacity of sheep in Western Australian during the 1960's. Ewes that grazed a lot of these clover pastures became infertile or never really produced many lambs. There were some abortions of foetuses. Also ewe lambs that grazed with their mothers often developed abnormal reproductive organs and so never had lambs themselves. So phyto-oestrogens are powerful stuff, for both good and bad. Lower oestrogen cultivars were developed quite quickly and the Clover Disease problem in sheep went away.

If you read Christine's LS paper, that is in the Village Library, you will see that the oestrogen in red clover is attracted to the oestrogen receptors in skin (and related vulval tissue), ie they match. The red clover oestrogen occupies and displaces the other oestrogen produced in the body so the inflammatory substances are not produced in the skin. Therefore there is no inflammation any more. Christine describes LS as a condition of oestrogen metabolism, rather than oestrogen deficiency. I get lost in the detail but every time I read the paper, a bit more of it makes sense.

Taking red clover is not a magic bullet. It will cut down the inflammation, buit there are a number of lifestyle and dietary changes as well, that could help keep your oestrogen balance tipped towards health.

Hope this helps.

Louise

HI Emily,
Quick response but yes, plenty of young women get LS. I'm mid thirties like you and have it. apparently started as a teen but no itching so never knew. must have died away as only when a doctor noticed that i have complete fusing that someone said something--i never knew this wasn't how it was meant to be! ;-)
two and a half years ago it reared its head, but has been complicated by horrible yeast infections (which is all the doctors seem to think it is...hmmm...)
anyway, i attack both.
glad the itching is gone for you, but the changes in skin mean the inflammation is still there. You definitely could try red clover if you want to try something natural as long as you aren't pregnant or breastfeeding or about to get pregnant. Christine has found it to be miraculous, Louise finds its helping her dermatitis as she said, and i'm feeling hopeful!
i also know food is a big trigger. i cut out 99% of inflammatory foods, worked on my omega balance... that really helps a lot.

re the skin, healing it is really important and i do think you can reverse teh white, as that is about the LS being active. i have found neem oil to be great and soothing to skin, and did have some skin peel off when i started using it (good thing!), but it stinks like nothing you've ever smelled before until it dries. i also found a cream that is helping the skin restore, but has safflower and soy oil in it which have the wrong omega's, so i don't feel great about putting that to somewhere i want to get rid of inflammation.

i'll post more soon but gotta get going.
but wanted you to know you are not alone!
Kiki

Hi Emily,

I'm also Emily, and I'm 33 and have had this for about 4 years. As Christine mentioned, I believe it is all about the Adrenal Gland. More on that below. I have figured out a way to manage my LS that seems to work, and yes, my skin has healed and come back somewhat. I think there will always be some damage, but the vulva and vagina has amazing recuperative powers (to heal form trauma of childbirth, right?). I noticed that when I eliminated the LS, my skin had a chance to heal a lot. Also, my sex life has come back (with orgasms, hooray!), and most days I forget that I even have LS.

Here is what I have learned and what has worked for me. In the past year I started working with a Naturopath (doctor of natural medicine) because I have given up on traditional medicine with regard to this disease (after seeking the "best" doctors, going to the Mayo Clinic, etc). Here is what my Naturopath and I have discovered:

1. Cortisone creams are terrible. The steroids actually thin and hurt the skin over time (even if they might provide temporary relief). Your vulva is one of the most absorbent parts of your body, so beware what you put on it. Also--pantyliners, tampons, and pads have bleach/chlorine in them, which, again, is being absorbed into your most sensitive area. Use chlorine-free brands found at natural stores ("Seventh generation" brand sells them) so your vulva is not absorbing chlorine!

2. My Naturopath and I have discovered that my Adrenal Gland was totally out of whack, not functioning properly. We now believe that LS is actually just one symptom of my Adrenal Gland being overtaxed and not working properly. Your Adrenal Gland controls some very basic chemistry that needs to occur in your body: your wake-sleep cycle, your energy levels, your stress level, your "fight-or-flight" responses, and basic hormone production (cortisol) (not reproductive hormones, primarily, although it is all connected). (It is VERY easy to get your Adrenal Gland tested!! It is just a "spit test" where you spit on a cotton ball several times a day.). It seemed likely that my Adrenal Gland was not functioning properly, therefore not producing enough hormones, therefore causing the LS. (OR, my body was compensating for the weak Adrenal Gland by "stealing" hormones from other places, and that caused the LS).

3. Why was my Adrenal Gland out of whack? And how to solve this? This was our next problem. By taking a simple blood test in the morning, we determined that I am Hypoglycemic. This means that I cannot handle sugar. At all. (When people eat sugar, our blood sugar levels soar, and then our bodies respond by pumping up the insulin. In my case, my body overcompensates by producing way too much insulin, causing a severe drop in blood sugar levels. It causes fatigue, crankiness, feeling "spaced out", and just all around badness. I had feeling this way to years and just ignoring it and continuing to eat more sugar to compensate!). If I keep eating sugar, this "rollercoaster"of chemicals & moods just continues. So, the best thing for people with hypoglycemia is to eat lots of protein (which balances our blood sugar levels) and avoid sugar. (I can still eat fruit and some breads, but I now avoid anything with added sugar or corn syrup in the ingredient list. For me, this was a huge sacrifice and challenge, as I love(d) to bake goodies).

4. I also learned that, guess what? Hypoglycemia greatly causes your Adrenal Gland to become overtaxed and overstressed.

5. I also learned that Sugar is a primary cause of many various skin conditions. You will not hear this from many dermatologists. They have been taught to treat the problem with medicine, not try to prevent the problem with diet/nutrition. I went to the best dermatologists at Mayo Clinic who told me that nutrition had nothing to do with my disease. Since then, I have learned so much about nutrition, and sugar in particular. Sugar is a highly processed food additive, not found in nature. Meaning that humans are not well-equipped to handle it or digest it. It is more of a drug than a food (highly addictive, non-nutritive, and changes our body chemistry).

6. I also went over my diet and lifestyle very carefully with my Naturopath. We determined that I was a hardcore athlete and kind of a stressed-out person (I bet many LS sufferers are stress-cases. Stress also causes over-taxing of your poor Adrenal Gland). I was not eating well, or eating enough. My body was nutritionally depleted. This will also tax your Adrenal Gland to no end. You are trying to function at a high energy level, and high stress-level, but not giving your body enough of what it needs to function. You can't go on like that forever without something happening. After a while, something has to give. For me, LS, was that signpost.

7. My remedy: So, my Naturopath told me to avoid all added sugar, corn syrup, etc. And she put me on a bunch of supplements, including Adrenal Assist (a mixed vitamin supplement designed to boost the Adrenal Gland), Vitamin C (anti-inflammatory and stress reliever), protein and whole greens health shake (protein balances your blood sugar level. The whole greens supplement makes up for not eating enough veggies), fish oil substitute, and multivitamin. All of these were doctor-grade (over-the-counter vitamins are full of artificial fillers that are bad for you). I have changed my lifestyle to be more conscious of eating more often and eating well. I try to eat mostly organic, to avoid other toxins and added hormones that could throw off my Adrenal Gland again. I try to slow down and enjoy eating and eat more, and better. I am still exercising a bunch (for me, a great stress reliever). I am doing yoga and trying to cultivate calmness and centered-ness.

I've been doing this for a year. The LS went away entirely. My skin even started to heal and come back. 6 Months into it, I lapsed. I started eating sugar again and not doing my supplements. A week later, the LS flared-up with a vengeance. Now I know for sure. Of course, it's been super hard. I LOVE baking and sweets and ice cream, and it's hard not eating sugar. (And I'm not supposed to eat artificial sweeteners, either--they are full of horrible toxins). But I also look at it this way: 1) I am lucky that there is a way to end the LS and 2) I am lucky it doesn't involve harsh medications or surgery. It's basically just treating my body right for the first time in my life.

I hope this will help you and others. I encourage everyone to see a Naturopath and to share this email. At the very least, it is quite easy to get tests for your Adrenal Gland and for Hypoglycemia (or sugar intolerance). Do it, even if your traditional doctor looks at you like you're nuts!

As for me, my next challenge is that I am pregnant with my second child. My first birth was vaginal, but extremely traumatic (43 hour labor ending with episiotomy (which I didn't want) and vacuum extraction, and vaginal surgery 6 months later to remove scar tissue). I am sure that didn't help my poor vulva, which already had signs of LS! So now I am contemplating having a C-Section, which I was always opposed to. I was all about doing it natural the first time (until 36 hours passed!). But I am afraid of 1) having a difficult birth again and 2) the trauma on my vulva, which has already been through so much with the LS. Does anyone have any experience or wisdom with this?

Feel free to email me with any questions or ideas!

Thanks,

Emily

Thank you so much for this, Emily!

I have FINALLY FINALLY FINALLY realized that I *must* give up my afternoon cuppa tea (a large mug, actually) and perhaps my morning one too. I talked about it with my dh this morning before I saw your post!! Tea is something we do together, and it has been such a sweet ritual - but it's really taking its toll on me.

Caffeine is the only adrenal stimulant out there in the plant world. Other substances are stimulating, but they work on the CNS and not the adrenals. I have *plenty* of data now that I really can't push my body like this any longer - as much as I love working 14-hour days. ;)

I will keep you posted on how I do.

:) Christine

Christine,

Thanks for your reply and all the wonderful information you've put out there! I totally understand about sacrificing eating rituals and giving up foods/drinks you love. For me, baking was a ritual I had always done with my mom. But after I lapsed and the LS returned, I realized that my health was more important! I try to remember that, but it's still a discussion I have to have with myself every time I am offered baked goods or ice cream!

Do you have any advice/insight about childbirth with LS? As I mentioned, I am pregnant for the second time and my first delivery was very traumatic (to my vulva, and to my psyche!), and I am reluctant to put my LS-ridden vulva back through that trauma. I am almost equally reluctant to get a C-section, although I'm leaning that way.

I am also worried about the LS rearing its head with the big hormone drop-off in the months postpartum. I have had this under control by fixing up my adrenal gland, avoiding sugar, and eating right, but having a baby throws everything for a loop!

Any advice would be so welcome.

Thanks!

Emily

Hi Emily,

Hm-m-m. I think you probably already have an answer to this. Maybe you just need someone to remind you of what you already know deep inside. You have virtually cured yourself of LS!! And your relapse gave irrefutable evidence of what makes your symptoms better and what makes them worse. That’s power!

What better medicine than to prepare for a natural birth by visualizing your healthy vulva stretching to its max under the symphony of natural hormonal flow? Many women heal from the trauma of a violent birth by planning and carrying out a gentle home birth. A warm birthing pool with a couple of seasoned midwives sounds particularly appropriate.

Think again if you believe a c-section would be any less stressful to all hormonal systems of the body! It sounds like they simply slip the baby out of your tummy. Search descriptions of the operation by our resident nursing student, Bad_mirror, for a reality check.

The wildcard is the vaginal surgery. Find out exactly what was done and consult with a childbirth expert to help determine what, if any, chances of complications there might be. We have had at least one member birth successfully post-rectocele repair (colporrhaphy).

On the one hand, I hear a strong, powerful woman. On the other, a woman who doesn’t quite realize she is in charge. You describe incredible healing, yet still talk about your “LS- ridden vulva” in the present tense. If I had to guess, I bet it is that scar tissue revision that is driving your doubts. The best way forward is to gather as much information as possible, AND decide what it is you truly want. Once that decision is made, develop a steadfast mindset that can only see a positive outcome.

(((hugs))) from Christine

Christine,

Thank you! That was just what I needed to hear. I conceived this second baby thinking that I would have a c-section... it was the only way I allowed myself to approach it. I guess I wasn't over the trauma of the first one (probably am still not--I delivered when I was living in germany and it was in a german hospital--I couldn't even understand what was happening around me!), and I had not been LS-symptom-free for very long. Now, things have shifted for me (mentally and physically). I will explore the vaginal birth option. A friend recommended a doula focusing on hypnobirth. I am also considering meeting with a Cranial Sacral therapist here who is focused on childbirth. Do you have experience with Cranial Sacral therapy? it is supposed to realign my body and fascia tissue to prepare for a more fluid birth process.

I would love to read bad_mirror's reports on c-sections, but was unable to find them on your forum (although the search yielded many other interesting posts! I esp liked the ones on "no push" labor... that would have helped me last time!).

And you're right about me... I am strong,but I tend to sacrifice and push through pain/hardship rather than stop, breathe, and nurture myself. I am slowly learning to slow down and remember that i deserve to nurture myself.

Thanks for the wisdom.

You rock!

Emily

This is a great forum. Thanks to Christine on the excellent article she wrote and her findings on the red clover tea and the connections with estrogen.

Now...my frustration is that I am a man:) There are a lot of forum posts online from women with this condition...but not men...especially not those seeking alternative ways to prevent or cure.

I(36) have had this for over 15 years and I think, that for me it is connected to when I had hepititis(A and B) when I was 19. Within a year from this I started to see the white patches. I immediately treated this with testosterone ointment with no success...then later with dermovate.

For a few years now I am using melagel (teatree oil), coconut-oil and at some point msm(sulfur) ointment which helps with the itching.
I have had this under control all the time and never had flairups on the skin. Just a slight burning sensation that increases when I am more stressed and over worked.

I am focussing now on my liver to strengthen it. And I will try the clover tea. I also am working on a formula oitment that includes different potent oils....including neem oil...calendula....black seed....red raspberry seed oil...and other high antioxidant and anti-inflammatory oils. I ordered red clover oil and will add this to the formula. Will see how this works. Will keep you posted on how effective it will be.

All the best and God bless.
Marcus

Hi Marcus

When you buy the tea try and get one that is mostly leaves and stems, with maybe a little flower material. The isoflavone levels in clovers fall dramatically once flowering is established. I have found it impossible to get just stems and leaves tea in Australia, so I just jam my teapot infuser with as much 'pasture' as I can, and make it that way.

I do admit that the aroma of the flowers is divine when I open my tub of tea in the mornings, but as far as I know they are purely aesthetic, and bulk up the leaf matter. If you cannot see lots of leaf and stem among the leaves, pass it by. Sometimes it is called red clover leaf tea, sometimes red clover tops, sometimes red clover flower tea. I think having a look at the material is the best way to judge it. You can also buy powdered red clover, but you have a snowball's chance in hell of working out what is in that!

I buy it bulk by the kilo, online, which lasts me about two months. If you buy it by the 50gm packet from the healthfood store it costs a mint. It is sometimes a bit hard to find because it is almost under the counter. They seem to mainly sell it as a cancer treatment, and I don't think our Health Department likes it. They see it as quackery.

Good luck.

Hello Marcus,

Thanks so much for sharing your story with us. LS is pretty intolerable with menopause, but children and teens with the disease are a heartbreak.Yes, it seems everyone with LS has a story of some kind of stressor or exposure. For me I think it was chronic adrenal exhaustion. I am not 100% cured, but have learned to modulate my dietary and life stressors enough to have it well controlled.

Estrogen is a male hormone, too, and I was fascinated to learn that LS-involved tissue in males is populated with beta receptors.

It may be much more complicated than what I have uncovered, but as far as I know the keys seem to be: keep androgens up and adrenalin down. As you probably have found, you become very sensitive to positive and negative changes and it becomes pretty easy to identify what strengthens and what aggravates. For instance, I have been feasting on concord grapes for the past couple of weeks, crunching the seeds down with the delicious grapes. The natural grape seed extract has made a noticeable difference - probably by preventing some testosterone from turning into estrogen (GSE is an aromatase inhibitor).

Red clover and alfalfa are interesting because they used to be a part of the Western diet, only to become strictly fodder for agricultural animals over the past 150 years or so. Many other pulses contain isoflavones as well, if in lesser quantities.

I am glad to hear you are doing so well. Please keep us updated. The red clover tea will not be a cure-all, but one more positive influence in this delicate balance. Red clover/alfalfa salve is the bomb! I gave directions for making it, which are buried somewhere in these forums. The search function is fairly good, so hopefully you can pull it up.

Wishing you well!

Christine

Hi Christine,

Very interesting you mentioning the adrenals. I have also found this in my research. Did you know that licorice root extract or tea is excellent for adrenal recovering or balancing. There are a few other adoptogens that also balances stress...like siberian ginseng. These help to tone down the cortisol..the bad boy that deals with stress and adrenaline. When your adrenals are out of whack...they cannot control excess cortisol. I hope I understand this correctly. Licorice is wonderful for this. But you have to be on this for a few months. I also ordered this and will start using it soon.

I order my herbs and oils from Mountain Rose Herbs. Not sure if you know about them. great company with lots of organic stuff. I received red clover infused oil from them and made a salve with lots of oils combined. Started to use this a day ago and will see how it goes:)

I do agree that there is no magic pill and that you have to attack this desease from both inside and outside.

Thanks and best to all:)

LS and perin's creme
has anyone tried this? I am using it and it does seem to be providing some relief.

also... I have had a complete hysterectomy and therefore have no?hormones. is that true? I have a vivelle patch for estrogen, and now I'm confused if estrogen - the lack of it or having it - is what causes the LS??

Emily - I just discovered your post from August, 2010. I'm curious about how things are going. Is your LS still under control?