Lichen sclerosis _{Page 3 of 5}

Thank you so much Sarita.
Love and Strength back to you.
xo

Also try the free remedy mentioned in the thread:
blank">http://www.abchomeopathy.com/forum2.php/59236/1

Second: Lycopodium and Phosphorous will also work on some dimension.
blank">http://www.abchomeopathy.com/forum2.php/123430/

Hi! I'm 40 and have suffered with LS all over my body for many years now.
I was missdiagnosed for several years, as Ring Worm. Go figure.
I have read that several of you find that the Cortizone creams burn. This may be because of what base they are in. ie: Urea is a great smooth base to use on body spots, but it burns like crazy on the vaginal area.
Best of luck to you all.

Hi,
I'm new to this forum - it's wonderful to find out one is not alone.
My history with LS is:
1983 - 1st symptoms, after extreme stress including single-handedly nursing my mother through terminal cancer. I was probably particularly vulnerable in that I'd had 4th degree tears from my vagina to rectum delivering a 10 lb. baby and have had multiple repair surgeries (I'm very tiny and should have had a C-section).
Getting diagnosed – 1980’s examined by the head ob/gyn at a teaching hospital in Canada. No diagnosis, just a group of med. students peering at me in the stirrups. A dr. at another teaching hospital biopsied me and diagnosed kraurosis vulvar (apparently a former name for it) and told me I was 'disgusting' to have 'let myself get in that condition.' May/07 - Finally, I had LS confirmed during the worst flareup ever.
I am a self-confessed health nut. For decades I've juiced and eaten strictly organically, taken my supplements, worked out regularly (I never eat sweets or sugar - the best thing to eliminate for candida). And I take probiotics.
I began studying holistic medicine in '69 and have been a professional for many years and I agree with belustudio (2007-01-21). I believe candida is really the common denominator. I can trace my entire history with LS and other autoimmune conditions from which I suffer to systemic candida (I was overtreated with antibiotics throughout my entire childhood and had a horrible sugary diet). When the candida worsens, so do my conditions.
I've so far held off steroid treatment for LS (suffered quite severe side effects when I used it once in the past). While it works well for many, and I may try it in the future, I'm very sensitive to medications and I'd like to try to deal with my autoimmune conditions naturally if I can. To that end, I've visited a homeopath/md in NY who's been treating my candida homeopathically and nutritionally and I'm about to try beta glucans (the one that's apparently the original formula) and tea tree oil.
My fingers are crossed for all who are afflicted with this condition. It's cost me a few good men.
If anything dramatic occurs, I will post it.

Hi All
Can I just say that finding this site has made me feel so much better. Not that all of you are dealing with this but now at least I feel not so alone.
My story is a VERY VERY DISTURBING ONE. Seven years ago I was out on the town ran into some acquaintances. I was drugged and raped. About two weeks later I went to the Dr's and everything checked out OK. I was so upset to begin with I just couldn't bring myself and waited.
After going to the Dr's several days later I woke up w/a serious case of molloscum. My Doctor burned all of that off. It was horrifying for me. I had never had intercourse w/out a condom and had only been w/one serious boyfriend prior to this.
From this point out my vagina and anus had drastically changed. I had chronic.. VERY chronic itching. I developed lesions here and there that did not test out as herpes. I believe it was from the itching. I later had a blood test that showed I did have HSV 2 and I later had a DNA test which showed I have a dangerous strain of HPV. I have had biopsies because my Dr. saw that I had some papilli.
In the meantime I had to tell boyfriends etc. about all of these problems that I had this chronic itching and pain constantly. Lets just say I sent at least one boyfriend running for the hills.
I did meet the man of my dreams. Got married, started my own business, am building a new home and am living happily ever after (accept for my chronic itching of course).
I have horrible constipation and frequent urination like you wouldnt believe. I think when I pass away I will have spent at least 40 percent of my awake life trying to have a BM or peeing (isn't that wonderful).
My Dr... basically wrote the book on Vulvadynia. I am lucky enough to live in MA where it is possible to actually find a good Dr. Excuse my bitterness. But I literally went to over 10 Dr's in the area. The last Dr. I went to screamed at me 'there is nothing wrong w/you!!! this is probably in your head because of what happened to you' she then sent me to my current Dr.
After being diagnosed with Vulvadynia (actually LS) I was prescribed some steroid cream. But about a week later my Father was hit w/a 20,000 lb crane and was left paralyzed from the shoulders down. I took off to Atlanta, GA w/my Mother where he fought for four months to stay alive. My wedding was six months after his accident. Lets just say that under this amount of stress truck loads of cream wouldn't have helped.
I was so freaked out I just couldn't bring myself to go back to my Dr. NOTHING was working!!! The strange thing is my Nana was so incredibly stressed when my Father got hurt she also developed Vulvadynia (I believe LS - fyi it is hereditary).
Last month I decided to give it another go. I went back to my wonderful Dr. who prescribed a different cream for me. Guess what it has been working like a charm! I have felt almost normal. I can even have normal intercourse again! I spoke to my Dr. on the phone yesterday and told her that my quality of life has improved 90 percent. I am using betamethasone dipropionate once or twice a day. After a couple months of this I am going to try to get pregnant. After all I have been through I am incredibly nervous as you might imagine. But I have to try!
My whole point in telling this story is that I worry about those of you out there who do not know what you have. This can affect your psyche in such a horrible disturbing way. You always feel like there is something wrong with you and you can never have a normal relationship or life. You can! If your Dr. is blowing off your systems walk right out of there and move onto the next. I just wish I had gone back to my Dr. sooner. Even with all of my problems I have still managed to find happiness and you can too. I feel for anyone suffering from this. It nearly destroyed me. You are not alone and you ARE NOT crazy by any means. This is a real problem that should be accepted by the medical community and be in main stream medicine.
I wish you ALL of the best.

TO: shalimar
I just wanted to say that I totally feel for your story.
It reminded me somewhat of mine. W/Dr's looking at you like you are nuts or something.
I just wanted to mention that I kind of feel the opposite about the candida.
I think that LS causes candida. I had never had a yeast infection or anything like that until I had LS for awhile. They say that if you wear tight pants that it can cause an LS flare up. I believe that the LS makes you more prone to moisture because of the itching etc you get infections a lot easier. I don't know if this makes sense it just seems to be what happened to me.
Just a thought!

Thanks for your comment, LadyL. I am so glad that you have found a solution that works for you and that your life is so wonderfully improved.
I just wanted to clarify something; my candida reference was not to a vaginal yeast infection, but to systemic candida which is very insidious, can go undetected for decades, and settles in organs and tissues, weakening the immune system and wreaking incredible havoc. It can be the cause of, and has been linked to, a host of problems, like eczema, MCS, allergies, IBS, prolapsed mitral valve, tinnitus, and autoimmune conditions.
On another note, EFT (Emotional Freedom Technique) is a helpful method for dealing with not only the physical but the attendant emotional/traumatic issues as well

Hi Shalimar,
Thanks for drawing attention the mental/emotional aspect of healing. I've had good experiences with EFT, and some neutral ones too, and was VERY impressed recently with two sessions of TFT - thought field therapy - which EFT is a descendant of. In my experience - and I wouldn't generalise from it -it was more effective and really got into all the nooks and crannies.
I had emotional trauma around the first time I had sex, and I treated myself mentally as if I'd been raped, and psycholgically victimised myself. I avoided penetration for a couple of years afterwards and guess what, the next time there was pain and rigidity. Previously, I should say, I had a really juicy alive sexuality (first orgasm when I was 5 years old!). To me - and I'm only speaking about me - there is no coincidence between the mental/emotional issues and the later showing up of physical issues. In my book, the mind - conscious AND subconscious - rules the body.

By the way, Linda did you have any luck sourcing Beta Glucans in the UK?

Right now I am treating underlying vaginal candida, and have finally weaned myself of my sugar addiction - yay! so now something can start to happen which was being blocked by binging before (and all the guilt that went with it).

I am also having good results with Vaginol tea tree cream - I think it's by Thursday Plantation. Good to get one formulated for that area as it's purer.

And I'm noticing that when I have a twinge, or a tingle - I've always just thought a stressful thought. Anyone else notice this?

Also, I find it hard distinguishing low-level candida symptoms from LS. I know the occasional labial tingles are LS ... but the twinges i get in my vulva... which sometimes shoot up my vagina... anyone recognise that as LS? If not, it's my friend Candida :-).

Also, as I'm in Australia at the moment I'm playing with sunning my labia!!! for a short time, natch, and I can't say if it's doing anything or not as my symptoms are super-mild at the moment - I'm mainly aware of it when I try to have sex; I get sore. (ok, the last time was in hot tub, where clearly there would have been ZERO lubrication, so I can't really say for sure I'd have been sore on dry land!) The sun thing, by the way, is because a certain kind of UV is used as a treatment for LS.

i also definitely feel better for wearing no knickers and sticking to skirts. Helps me feel more womanly too!

For those of you with anal symptoms, the vaginol cream is also really great when wiping that sensitive skin.

Hi,
I have managed to control my lichen sclerosis with 4,000 mg of vitamin C. I noticed (by mistake) it was taking away the itch. I stopped taking the vitamin C and the itch came back. If I don't take enough vitamin C the symptoms come back too. I then went online to see if there were other people who had success with this and I did find a few who communicated that this had worked for them. It doesn't hurt to try - to see if it works for you.

Also, I went to a naturopathic doctor who informed me that people with lichen usually suffer from very low levels of vitamin D. I had my blood checked and found very low levels of vitamin D. So it wouldn't hurt to get your vitamin D levels checked too. I also supplement with vitamin D - but it is the vitamin C that made the difference and keeps this thing in check. Good luck!
Caro

Hi,
I have managed to control my lichen sclerosis with 4,000 mg of vitamin C. I noticed (by mistake) it was taking away the itch. I stopped taking the vitamin C and the itch came back. If I don't take enough vitamin C the symptoms come back too. I then went online to see if there were other people who had success with this and I did find a few who communicated that this had worked for them. It doesn't hurt to try - to see if it works for you.

Also, I went to a naturopathic doctor who informed me that people with lichen usually suffer from very low levels of vitamin D. I had my blood checked and found very low levels of vitamin D. So it wouldn't hurt to get your vitamin D levels checked too. I also supplement with vitamin D - but it is the vitamin C that made the difference and keeps this thing in check. Good luck!

Hi Caroco,
Thank you, that's really helpful and probably a bit of a message to me as I was talking with my mother just now about Vitamin D. I read a huge study a couple of years ago where it's anti-cancer effects were found to be huge. Deficiency is very common and the recommended daily amount is now 100iu - quite high. Sunscreen and sunglasses block it. Deficiency is also associated with pain in the body. Thanks for the nudge!
As for the Vit C connection... interesting...
I think alkalising the body is also very important, so would think it would help to take a buffered, alkaline version (not the cheapo stuff). Easier on the stomach too (and would make pee less acidic). I will drink more lemon juice (in water!) and add a Vit C supplement.
Thanks for the inspirations,
love Sarita

Whoops, make that 1000iu, not 100iu, for the Vit D rda!

I originally suffered LS and vaginal cancer 10 years ago. After some laser treatment from a gynae surgeon I never had any more problems. I am now 35 and have just given birth to my 1st baby. I started to itch and tear 2 weeks b4 the birth. During the birth i tore all around my vulva. I then got terrible itching and ulcers. My Dr gave me thrush treatment, it never worked. I am now seeing a homeopath and using calendula cream, this has helped the itching considerably. I read on other forums that taking wheat, sugar and non-organic dairy out of the diet too. (Regular dairy contains lots of artificial hormones and antibiotics that they inject into the cows to make them produce mor milk). I have also started to address my emotional problems. I made a connection between my vulva problems and emotional issues when I read 'Women's bodies, Women's wisdom' by Dr Christiane Northup. A must read for every woman! She related vulva problems with the inability to say NO to a boundary violation, invasion in one's emotional life, guilt around sex, being controlled, unexpressed complaints accumulating for years and lack of courage to change negative aspects of a relationship. I realised that recently and 10 years ago I have had issues with my mother relating to all of the above. In my household as a child my vaginal was called my 'privates' and I was made to feel very guilty about sex as i grew up. The book states that we have to solve our problems on a physical and emotional level otherwise they will only reoccur again and again. I couldn't agree more. We have to learn to love our bodies and ourselves unconditionally otherwise not only do we suffer but we pass our negativity onto our children and they suffer too. We can not just expect to apply lotions, creams and have surgery to fix these problems ladies. We must all understand that our negative thinking also have a negative effect on our bodies.

Thanks lisarose, I agree and am aware that it's the mental-emotional aspect that holds the key for me at the moment. I'll get a copy of the book you mentioned.
From the logic of what you said: the laser treatment got rid of the LS and cancer, but as you hadn't dealt with the underlying emotional issues, they resurfaced in another form (itching and ulcers)? This makes sense to me and confirms what I read elsewhere.
Thanks too for the reminder about non-organic dairy products.
Sarita

I was diagnosed with LS several years ago. It is genital and perianal. I've also had two surgeries for vulvar syringomas. I have tiny syringomas on my face around my eyelids too. I've been using clobetesol and lidocaine for several years without much relief.

More than ten years ago I started itching in this region and it has grown progressively worse. I can wear no pads even though I use so much medicine. Even all-natural pads make the region swell and crack, the skin turning white and as stiff as cardboard.

During the worst outbreas, peeing is a painful ordeal -- so painful that I almost pass out. The pain is so bad that I don't see the point of living while I'm calming down just from using the bathroom. Why me, why me is my battle cry and I don't know how much longer I can take this.

Later this week I have to have another biopsy for both conditions as my ob-gyn knows that the clobetesol is not working. Even the Lidocaine stings like hell and Cortisone too. Even vaseline stings when I've been pressed to try SOMETHING to help me pee in peace.

Nothing.

I am 55 and this condition is so painful and shameful that I can barely stand it. I also have HPB and NIDD. I used Prednesone for a different reason and it made my blood sugar shoot up sky high, so I don't think I am going to be able to take steroids. My NIDD is not well controlled, but I am trying harder.

Any help out there before I lose my mind would be kind.

Hi WannaBwell,
sounds like hell.
Are you open to the idea that disease has an unresolved emotional component that ends up being expressed in physical form?
My gut feeling, for what it's worth, is that you have (understandably) a lot of pent up emotion about your situation which it would be helpful to really let go and express and release (tears, rage, anger) in a supportive setting. Keeping strong emotions in the body causes mayhem in the system. Often we find it easier to release one emotion than another - eg, we can cry, but not get angry. Or we can battle and fight and feel angry, but not cry.
Once you let all that out, you can explore what's underneath that, & really truly explore the 'Why' of 'Why me'?.
My recommendation would be to find a Journey therapist to work with. You can also buy the book, The Journey by Brandon Bays, to read about the process. It will allow you to make a journey in your minds eye to that area of your body, and find out what's going on there, and where it all comes from. And resolve the underlying issue.
Good luck and let us know how it goes. It sounds like its time for more than another medicine/surgery.
And, I'm aware as I type this that I could be giving this advice to myself!
love, strength, hope,
sarita

I thank you for your reply though it left me with mixed emotions. I hope you are not saying that I have unresolved issues about my sexual body parts and that is what has caused my illness. I don't. I did not compel Adam to eat the apple so to speak.

I am perplexed more than anything at why I have this disease and get to feeling hopeless and inhuman when a cycle cuts me down. I can not properly walk nor use the bathroom and if I was sexual active, that would be impossible and may always be impossible. I can live with that.

What I can't live with is the pain and itching. My issues surround those two very real physical manifestations of a physical, not mental, illness. I want them out of my life.

I think journaling is good as a daily habit and I am sure that type of therapy is helpful on many levels, but I think this illness needs a medicinal answer. At times I think that having no genitals is preferrable to the pain. So any anger I have is at the pain and the illness, not at myself or my body parts.

Here's another aspect to think about. Illness and disease strike people without regard to their financial status. I work but still struggle every day, as I am sure many people are right now. I can't afford the type of therapy you describe though I have medical insurance. I also need immediate relief so that I can even begin to think about 'what next?' It is very difficult to imagine journaling when I can't even pee.

I do appreciate you taking the time to answer my post and for trying to help me. It's just that I am at Maslow's 2nd tier of the hierarchy of needs, and that is Safety. I am far below the top level of self-actuality. That's the level your post seems to guide me to, but the issue of constant pain is not going to push me up there any time soon.

Hi WannaBWell,
No, you didn't compel Adam to eat the apple, and none of this is your 'fault', so to speak - and i'm not suggesting it's a mental illness or psychosomatic or less than very physical and real.
And, the question remains, what's going on? why is this happening?
What I believe from my own exploration and experience is that there is a strong connection between the mind (thoughts, beliefs) and emotions (stress, etc) and what shows up in the body. This is absolutely normal and we can see it happening all the time - the body responds constantly to what we think or feel.
So, when treating a disease at the level of the body doesn't work, it's useful to look and see if an intervention that INCLUDES the mind and emotions will make the difference that creates healing.
Personally I believe that a stress can begin at at a level other than physical (eg, emotional),and if it isn't resolved for any reason - which is pretty normal too - it can show up eventually as a physical illness.
I'm not saying this is your situation, I don't know.
But maybe it's worth exploring this side of things, if you're running out of answers.
I wasn't suggesting journalling as such, although that may be helpful.
I was suggesting a specific dialoguing/visualisation method created by a woman called Brandon Bays, who used it to heal herself of a balloon sized tumour in her womb, with no surgery or drugs. The book and method is world famour now and is called The Journey. It will be at most librarys; there is also an audiobook which talks you through the process. So you dont actually need a therapist.

WannaBWell you have my empathy, truly, as I have been in screaming pain with LS, unable to sit or stand or walk without the feeling of a million red ants itching inside me, and superating skin spreading front and back. I was at my wits end.
On a practical, physical level, I found ice to be helpful - but be *very* gentle and run it under a tap first to stop it sticking to you, and don't let it 'burn' you. If you can find a way of immersing those parts in really ice-cold water that feels great too. It's numbing and anaesthetic, relieves itching, and floods the area with blood which helps healing.
I found it important to keep that area cool at night, using an arrangement of sheet and duvets so that area only had a sheet while the rest of me was warm.
You might also want to look into Emu oil, which can also be mixed with tea tree oil. (patch test to make sure you're not allergic to tea tree first,as some people are. i find I can use it neat now.)Emu oil has anti-candida properties, helps with LS and is a 'transdermal carrier' so it takes things deeper into the skin.
Good luck,
Sarita

I truly do thank you and hope I didn't sound ungracious. I am just in so much pain, but I guess I am not alone. I will try your suggestions.

I do believe also in the mind/body connection but have not heard of the person to whom you refer. I'll do more research. After my doctor's appointment tomorrow and after healing from the 4th biopsy, I will be in less pain. My mind will be more open to exploration.

Peace to you and thanks again.

I have had LS for as long as I can remember. I was diagnosed around 18 after seeing a string of 13 Dr.'s I finally found someone who took me seriously. (One actually sent me to a shrink and said it was all in my head!) The LS was confirmed by biopsy- Ef'n painful!

I also had Vesibulitus and almost went down the path of a vestibulectomy, but thankfully it went away.

I have tried a great many of the steroid options but have had success with:

For pain management- Xylocaine 2% Jelly- numbs the area. I f sex is painful- apply this jelly prior and use Lube. You need to train the body to not associate sex with pain. They recommend using a dilator- to stretch the vagina daily to maintain elasticity.

I have also been on Elocomb Ointment 0.1% for the past 8 years- irregular flare ups from time to time.

I was on a difulcan regiment several times a week. Opt to eliminate Sugar, Flour, Yeast and Dairy from your diet- for good or you will get yeast infections.

Now, I see a Naturopath. I have committed to my overall health and wellness and found I need the support to stay on track. You get a built in counsellor, nutritionist, acupuncturist, and homeopathic remedies to support.

NOTE: Echinaechia should not be used by those suffering form Auto-Immune Diseases AKA us! Little did I know I used this as a cold remedy for years.

I am interested in the Beta Glucan and will begin my research...hopefully there is a yeast free alternative.

Wow, it has been since almost 2 years since I posed. I am still seeing a therapist. My biopsy report read borderline LS. Isnt that like being ' a little bit pregnant?' Geez, I am symptom free and havent consider using the cremes or jellies for along time. PLEASE DO READ THAT I THINK THIS WAS ALL IN MY HEAD! My sex life went in the crapper for along time and is just now coming back around. But barely. It doesnt take much to upset the balance in the LS area. And sometimes I even think the stars have to be aligned just so. I obviously didnt have a full blown form of this disease. At 54, I am still concerned with post menopausal issues, high lipid panels, and high blood pressure. I dont any diary occasionally ice cream with my pie. No sugar to speak of. Still drinking coffee once a day. I am much healthier than when this journey started. Or at least I tried this bad boy LS, with other things. I am grateful for this fourm and pray that I wont be on here yet another long time period. Thanks for the updates.

So Christy what worked for you? What symptoms did you have, and what led to you being symptom free? It's wonderful to hear of a real success story!

Thanks Lucky13. I'm interested in what you wrote about the dilator as I haven't had penetrative sex for about a year and wondered if I was getting tighter down there... is that part of the picture with LS? or was that a vestibulitis thing (I also have that - haven't had any luck getting hold of the Xylocaine 2% jelly from my doctor though - are you in the UK or USA?)

About echinacea - I asked my gyae about this, who specialises in LS research (Miss Wendy Reid of the Royal Free Hosp. in London) and she explained ( in terms to complicated for me to repeat) that it was FINE to boost the immune system via naturopathy such as echinacea - the way LS works it isn't impacted by that.

Which was a relief to me, as boosting the immune system is a big part of combatting candida, which was and is a big part of the picture for me.

Thanks for posting,
Sarita

It started with what I thought was a UTI, I was leaving on vacation in a week and insisted the ob gyn see me, thing was I had started using the OTC bladder treatment, and they never saw any bacteria in the urine. Okay, I went on vacation and spent alot of time in the bathroom ( I was at the beach) I came in from the ocean one day with the clitoris swollen and everything looking different, of course I hadnt actually looked things over down under for 2 decades. So it was hard to tell what I was comparing, but I definately saw some thin white patches, and overly stretched looking tissues. Of course my soft tissue was not happy with the constant urination. I convinced a dr. to give me the pill that keeps one from ' going' all the time. I thought for a while I had a yeast infection, so I took those drugs too! Meanwhile, things are looking like they are getting smaller and labia looks like it is disappearing. Meanwhile, I am doing the high power topical steroid creams, which of course makes the tissue, thinner and more sensitive. The biopsy says in laymans terms 'borderline LS'. I got off EVERYTHING except my xanax and ambien and started seeing a therapist, who got into some things that I really didnt think had anything to do with LS. But I know you dear women understand that I was willing to try anything. My clitoris still gets sore and there is one spot on the labia that when it gets unhappy drives me back to cotton underwear and loose clothing. My ob gyn did recommend a soft dildo and lots of water based lubricant and patience! So no more hot tubs, and premarin cream topically around the labia and clitoris. That is all I do. Except for the vitimins, get plenty of rest, water and omega 3 foods. I have lost 30 lbs, which puts me feeling better both physcially and mentally. I am off the xanax and ambien. Occasionally take something to sleep, but not often, I still do the pillow between the knees, to keep pressure off my back and in between the legs.

Thanks Christy for the full and quick reply.
i'm also staying clear of steroids but sometimes doubt my decision on this as i've noticed in the last couple of months that my clit is definitely shrinking and unpleasantly sensitive, and my vulval skin and vestibule seem tighter. hmmmm...

What is xanax and ambien?
Did the therapy seem to help with physical symptoms? (even if it wasn't on stuff seemingly related?)
Is premarin a steroid cream?
thanks again,
sarita

I do want to add that my therapist has helped me SO much. I realized one day not that the symptoms DISAPPEARED overnight, but I did wake up one morning, realizing that I was focused on something else besides the LS. Which I was sure was the end of my womanhood as I knew it. I owe him much! However he reminds me every week, that I did the hard work but not stopping when the symptoms when away. By looking into what sends me over the edge in many aspects of my life, why? What is it connected to, my past, my childhood, and most importantly how it affects my health. It has been an eye opening experience, and I can still go to those dark places, that cause that bad things that flow from the mind, spirit and body. Which I now believe are so intertwined that it is down right scary!