I have both LS and Thyroid, I have Hashimotos. I am not sure if this holds true, but it seems if my thyroid is under control so is my LS.

Julie,

I thought of using aloe plant, too. Just haven't tried it yet. Been trying everything else. I will take your suggestion and pick a few aloe leaves, put in the fridge, then go for it. Thanks for the info.

I have been reading all of the posts on LS. I was diagnosed two years ago and have been on the search for that cure. Aloe seems to work but I will try the fresh leaves. The more I read it seems like it is an immune issue. I have started to take MSM and it seems to be working well. I have also had some success with Wheatgrass cream and Emu oil. I have changed my diet to eating mostly Organic foods and trying to keep toxins from my body. Burdock root also seem to work. You have to keep a positive attitude and don't get stressed. It is great to hear from others. Together we will find a cure.

I was diagnosed with LS 24 years ago. It is totally debilatating and you can never be sure when it will flare up. I have used ALL the different treatments. Some of them work better than others. However, I was told a couple of years ago by my GYN to soak in a hot bath with a cup of "Instant Ocean", it's the salt that you put in fresh water aquariums containing salt water fish. IT HELPS!!!!!!!!! I use it in combination with the Clobetasol ointment and rarely have the severe issues that I use to have. I do have an autoimmune issue, which some DRS have said go hand in hand with nightmare, mine is a thyroid disorder. As Im nearing my mid-forties, I want to hear what happens with this after menopause and as I get older. It's nice to know Im no longer alone, for too many years I felt as though I was. I hope Oprah and Dr Oz will do another episodes about this condition. I too pray for a cure.

I was told I had this about a month or so ago now by my OBGYN. I had symptoms of the disease for about 6- 8 months. It was not bad enough or consistent enough to diagnose at that time. Anyway, I was basically told it's no big deal, here is a script for some cream we will see you in a month. I am a diabetic also. I left ,went home and started doing research. I found out, it is a big deal. I seem to be having side effects to the clob. medicine. It has effected my vision right away within 24 hours. Now I am having a lot of other symptoms. I have no energy at all. I can't tell if it is from the meds or if I am trying to go into another type of autoimmune issue. My iron, B-12 and Vit D levels have bottomed out in the last several months. I HAVE EXTREME fatigue. My regular MD is running a lot of test on me right now. The vision thing is driving me crazy. My eyes burn all day and my vision is blurry. I am also having headaches. I am thinking of trying the super green tree extract and Neem oil that I saw suggested on here. I have a very supportive family and have been married to a wonderful man for 21 years. He has been great through this. It is starting to wear on me...all of it. These new symptoms are the worst. I just keep feeling it is this medicine.

What was your reaction to the Clobestol? I have recently been diagnosed with Lichen. I think I am having an allergic reaction. Throat feels like it is closing up, heavy in my chest, Fatigue like you can not imagine. A few times I almost had my husband take me to the emergency room, I really thought I was going to die. My doctors have been running all kinds of test looking for anything (cancer) that might explain these symptoms. Everything so far has been negative. I contacted the pharmacy and they said "we have never heard of this, it's not the medicine." I have been off of it 2 days now and I am feeling some better. I am waiting to see if all the symptoms go away. Mean while I am looking for an alternative to Clobestol.

What was your reaction to the Clobestol? I have recently been diagnosed with Lichen. I think I am having an allergic reaction. Throat feels like it is closing up, heavy in my chest, Fatigue like you can not imagine. A few times I almost had my husband take me to the emergency room, I really thought I was going to die. My doctors have been running all kinds of test looking for anything (cancer) that might explain these symptoms. Everything so far has been negative. I contacted the pharmacy and they said "we have never heard of this, it's not the medicine." I have been off of it 2 days now and I am feeling some better. I am waiting to see if all the symptoms go away. Mean while I am looking for an alternative to Clobestol.

I too was diagnosed with this about 8 yrs ago. Luckily at that time I caught it early and the ointment prescribed helped. It went into remission until a year ago and now I not only have the itching I also have tears and always irritated . I also have symptoms that mimic a bladder infection. I too would love to hear Dr. Oz talk about this. I have been researching this and am now going to try some of the advice from other sufferers. I can't believe there is no hope to cure this disease. I empathize with all who have it.

Hello All, It's Carlena21 here, I haven't posted in a while and thought I'd check back to see what's up. To 4tammiscot: clobetestol is a powerful steroid to which you may indeed be allergic, the ointment is less irritating than the cream( he cream has more additives in it) So do not think you are crazy. A woman's instinct is more on target than most give credit. So trust yourself. Be proactive. I would find out from a doctor if you are allergic to the compounds in that steroid through a simple test a dermatologist can do. Ask your pharmacist for the "contraindications pamphlet" that comes with every medicine, including clobetestol, you are by law entitled to it, read it,you find you may be one of the minority that is ultra sensitive to this drug. If so, take it to your doctor and show him. These doctors have no clue what to do with LS, they just take the most recommended drug and hope it helps their patients. But because LS is an auto immune response, there may be other factors at work preventing your body from responding to this drug. Ask questions! You may also be experiencing some anxiety, which is normal. This is a painful, irritating, ridiculous disease that affects so much of our lives. I know, I have it. But fortunately I have been able to eradicate it to 99.5%. There is still a trace of it on my vulva, but no where near the huge area it covered in 2003.
With regard to the clobetestol, it is best to apply it in conjunction with a buffer, such as A & D ointment or vitaimn E oil. I've used Neem Oil from India, but it has a pungent smell that can be a turn off (smells like saffron) and it also can be acidic which can irritate some people. A & D is for baby skin, so it is pretty innocuous and will protect the other skin while you target the LS. I take a q-tip, swab Super Nano Green Tea extract in very small amounts over the area ( it is high in antioxidants but also strong so use sparingly) Apply no more than a q-tip amount of the Clobetestol to the affected area, then apply the A & D over it all. The A & D will sooth the skin and keep your underwear from rubbing. But I found unless you used only a tiny, tiny amount of the Clobetestol per day, it did more damage burning the healthy tissue surrounding the affected areas.
But I also found that reducing stress as much as possible, going without underwear whenever possible, (hint: wear loose sweatpants at home with nothing underneath), giving up panty hose whenever possible (creates too much heat, your body needs air to heal), eating orange vegetables, steamed or in soups (an ayurvedic remedy to heal the second chakra - the part of your body which houses the vulva), meditating and quieting the mind, taking warm baths in a small amount of baking soda ( the salt has a healing property that draws blood flow to your tissues, don't overdo it!) talking to your gynie about using low dose estrogen such as Estradiol gel or cream( linked to helping LS by strengthening the vaginal tissue and vaginal wall tissue thus increasing blood flow to the vagina and vulva, take a vitamin B12 supplement daily, take 12 drops of Super Green Nano green tea in 4 ounces of water, or drink a few cups of regular green tea daily ( has antioxidants that help with auto-immune issues). I also started doing acupuncture twice a month for LS. Acupuncture simply directs healing energy to the spot in the body in need of resources through the Chinese meridian system. Until I did the acupuncture, I would say I had the LS in control to about 85-95%. Once I started the acupuncture, the healing of that last 15% was amazing. It makes sense because acupuncture uses the body's meridian system to strengthen it's own immune system. I am now at 99.5% healed. I only say that because I can still detect a minor shadow of affected area, and if I am under stress the area starts to come back. So I go after it aggressively with an acupuncture treatment, or meditate and reflect on what's causing stress, and try my damdest to get rid of the stresser. I still keep some clobetestol around and use it only sparingly as it will jump start healing, if I start to regress. I think we are sort of on our own out here with this LS and whatever works within reason is what we have to work with. I choose the path of least chemical intervention, because it feels right to me. I know I touched on the idea of LS as a response to some sort of trauma a woman has experienced in her past, whether it was direct, or whether the effects of some sort trauma has just manifested itself in that region. Dr. Christiane Northrup addresses these issue in a variety of her books. I have gleaned a lot of wisdom from her. Check out her books. Though she doesn't have a chapter in her books specifically devoted to LS per se, she is very good at discussing how our emotions and our choices as young women affect our physical well being later in life, especially our choices with our bodies and our relationships with others and how those affect our immune systems. A tremendous enlightenment for me on my road to recovery. Please feel free to ask questions, as I am doing some research on LS for an article. I hope I helped. God Bless. Namaste' Carlena

Hello,

I have had LS for a few years now but was only recently diagosed. I'm using the Clob cream twice daily and it does help but I just experienced another tear and am in great pain again. I have been having headaches (sort of dizzy/nausious type headaches) ever since I started the Clob. My pharmacist doesn't think it is from the Clob. Has anyone else suffered from headaches with the Clob?

I never had headaches with the Clob. but used to take baking soda baths for 10-15 min and the itchiness subsided for a few days. I poured th baking soda into the small amt of bathwater when the water finished filling the tub to 1/4 in height. Now I have a mild case of LS, thank goodness. I suffered enough. Tell me, does spicy food irritate it more? I'm trying to figure out. It was itchy tonight following dinner eating Korean food, I told them not spicy but still it's spicy, that's the 2nd time a waitress told me there's no spice in 2 different meals! 4-5 days before my time of the month I get a bit itchy. Had this darn thing since 2005, and yes I suffer with the sm labia gone just about, and it's sickening. I refrain from relations now, and I didn't even have the chance to marry yet and I'm 50. Each time of 'you know what' I need about 2 weeks to heal. Men don't understand this part. I might have to meet someone impotent but then there's all this viagra around.

We need more research money spent on LS, if they spend on Prostate cancer, which they should too, we women need some medical breakthrough as well. I must start eating more root vegetables which I don't do very often.

I have no idea of what soap to use in the shower. The orange neutrogenia bar is so-so. I used to use Aveeno but forget it, and dove, unscented no thanks anymore. They all have perfume. I used to use all the Wal-mart shower gels and loved them... but I didn't know what was happening, never heard of LS until 3 years after I was diagnosed. There's some theory saying that not enough blood gets to the area to revive tissues.. due to lack of exercise, but I've always been active. Luckily LS doctor visits and procedures are covered by the Ministry in Canada. I must say though I've been up endless hours researching online for new breakthrough theories but nothing. So where is the research being done? There are many in England with it too and I think about as many in the USA. Somewhere I read there are 6000 in the US, but only 3700 in Canada who suffer.

I eliminated all chemicals as much as possible, clean with vinegar/water or baking soda sometimes, cotton undies, nightgowns cotton only, even bathrobe, bed sheets - which means I have to take a flat sheet if I travel - geesh. And I use laundry detergent non perfume ..so far, so good.. Arm & Hammer. Precautions galore. I'm allergic to perfumes (not all), perfumed soap and hand creams..that smell.. there's nothing left!

Good nite. Thanks for your time. Comments welcomed. My heart goes out to every lady or girl who suffers. My doc told me that people with LS should not deliver vaginally in his opinion cuz they may pass it on.. I dunno.

I have been looking all over for A & D ointment. I live in Canada. Is it common I can't find it anywhere. Maybe I will have to order on line.

I was recently diagnosed and had bad reactions to the clobetasol ointments and creams. The itching was unbearable. I researched homeopathic remedies on the net and saw Emu oil. I asked both my gyno and dermatologist and they said to give it a try, "if it didn't help, it wouldn't hurt." It's been 3 weeks on the Emu oil and I've had great success. I use it in the morning and before I go to bed. You can buy it on-line from many different vendors. Just make sure its pure and refined with no additives. {color:#800080} Good luck everyone. {color}