Full Thread

Dee (Utica, Mi) on 07/23/2011
4 out of 5 stars

I have had symptoms of LS for 2 years now and have finally found a way to keep it under control. The symptoms started after menopause with extreme vaginal dryness. Then the vulvar skin breaking, bruising and vaginal atrophy began. I work for a GYN doctor so I knew what was happening to me. I did try Perrins cream which helped a little in the beginning. I vas very reluctant to use any prescription medication, but after suffering for so long I finally tried a very small dose of Estrace cream vaginally once or twice a week which has helped alot. (I did not want to use Steroids). I also apply pure vitamin E oil (found at Target for $5.00) to the vaginal/rectal area everyday after bathing/soaking. I use only natural soap very gently in that area, no bleach on underwear, avoid any perfumes or strong dryer sheets that irritate, no underwear when at home and only lightly blot when using toilet paper. These things have helped me tremendously. Avoiding sugar and taking high potency probiotics do also help. I hope and pray that a natural cure can be found and that the cause of this awful condition will soon be discovered. I have been doing my own research and taking note of the similarities in women who have this condition. Hope this helps someone.

Replied By Kim (Effingham, Usa) on 08/17/2011

Hello, I too work in the medical field, have you had any success with new insights from MD? Do you visit Pubmed frequently? They have found the tissues to be abnormally deficiet of antioxidants. When I use them (above) it really does decrease the symptoms. Lycine works too.

Mine stopped reacting, skin was pinking up with oral intake of vinegar - the very same reaction with MS and vinegar. MS is an autoimmune disease. Vinegar inhibits a reaction of the autoimmune.

Western medicine has found that some of the medication used for anti rejection for organ donors are working but not resolving it.

Does the Estrace stop the progress of the disease?

For research purposes do you have Estrogen dominance? Thyroid link?

I was hoping Ted would comment, maybe he has something to offer.

Replied By Ana (Toogoolawah, Queensland Australia) on 08/30/2011

I have what my doctor described as 'Extreme LS' this is where I have LOST most of my vulva and all that remains is the opening ( very small) and part of my clit which is not very painful to. The lenght of my vagina has shrunk to just 2 inches from top to end and if I lose the remainder of my clit I will have to have some sort of mobile tubes to incert when I need to pee.

I have tried everything, cremes lotions ACV, oils, you name it I have tried it including Perrins offerings, even used steroid cremes. Nothing worked. Todate there is NO cure and may not be one in my life time (I am 67) but there is some trials been done in Sweden or Denmark where they are trying out natural Progesterone creme. , available only by script in Australia ( big Pharm dictates here, so Aussie and NZ have to buy from USA). You also have to be careful using Progesterone if you are postmem, which I found to my cost, on 2 seperate days after two small dabs I was in agony with miscarriage/labor pains and the need to bare down, this lasted over 1/2 an hour till I had a show of blood. It turns out that I have a medium fibroid in on the back wall of my womb and the Progesserone acted a prelude to esterone which fed the fibroid and caused it to grow and as a postmenopausal woman that made my body think I was pregnant and it had to go. Thats what my last gyno said, but there again she said I had vaginitis when I first visited her for the itch and dryness 2 years ago. My GP has now got me on DermAid 0.5% which is not so harsh and it helps with the itch, I also sit in a baby bath of warm water with 1/4 cup ACV 1/4 cup Bicarb soda, and 1 cup Magneesium Chloride which I buy from food ingredient suppliers and I find this is works as well as anything I have tried so far and all 3 are good for the body anyway. I will try Argan oil in the blend next for the dryness.

Replied By Kim (Effingham, Illinois) on 10/16/2011

Wanted to let everyone know... I started using Niacinamide and Lycine (mixed it in a small bottle of pure water) spraying it on the LS and then applying Argan oil, my symptoms have decreased by 60%. I also quit drinking coffee and the skin on the backs of my arms and legs cleared up. Not sure if this was an allergy and LS is connected but am not ruling it out.

This is such an awful disease. Hang in there.

Replied By Cindy (Ft. Lauderdale, Fl, Usa) on 11/29/2011

Hi,

My symptoms occured exactly like Dee's. I don't have itching or any white spots. But I do have some atrophy, white thinning skin in the folds, some past bleeding. I'm really upset that my atrophy will never grow back. This will prevent normal, painfree sex.

I was given potent steroids to apply topically everyday for one month, and then down to 2-3 times per week. After six weeks, my skin looks whiter than ever and I think it's gotten worse.

I took myself off the steroids, but needed something else to replace it. I wanted to do an all natural solution, so I searched this website as well as many others. After much research looking for women with my similar symtoms, I decided to try using Red Clover infusion/tea drinks. Everyone has recommended one quart per day. It has many anti-inflamatory properties as well as healing properties. Research has also showed that LS may be helped by megadoses of antioxidants. So, I went to the heath food store and bought the strongest antioxidant powder mix I could find (they work better, absored more than tablets). That's what I take internally.

As for what to use externally in the vulva area, I decided to use Neem cream followed by Organic Coconut oil (comes in a large jar, very soft and melts in your hand). Both have amazing healing properites, and the coconut oil replaces the essential fatty acids that the skin in this area desperately needs. I use coconut oil in place of everything I would have used butter or oil for, for example, use it for cooking eggs, baking, etc. It also can be used on the skin. I put it all over my body after the shower as a moisturizer. It is awesome! My nutritionist raves about it and uses it for everything also. It's a superfood!

I have used these drinks and creams for two days now, and my skin is already pinker! I still have some white skin in the fold area, but I am hopeful! Before this, I had an almost totally white vulva! I have also thrown away all my sweeteners with Aspartame, and will use only Stevia. I suggest everyone cut out the sugar, even honey. Sugar is sugar, and it creates an imflammatory reaction in the body.

It's worth a try, anything is better than steroids! Let me know how it works for you.....

Replied By Deanne (Ontario) on 01/14/2021
Can you please post what kind of neem cream please!

Replied By Jackie%2520C (Dallas, TX) on 02/04/2022
Hi Cindy, I have been with LS for 2 years now, my symptoms had disappeared during this past year but came back with a vengeance, you said you bought powerful antioxidants, can you share which kind, were they powder form, last night had a sitz bath with ACV for the itching and put some clobetazole or else wouldn't have slept much

Replied By Lynn (Kansas City, Kansas) on 12/17/2011

I, too have heard of the coconut oil and already use it for my omelets and other cooking. I have had LS for 12 years (43 years old now). The labia is fused for the most part on both sides, with pale, thin tissue. The majora has shrunk a little, but is still somewhat pink. In the beginning, I was put on clobetasol, etc. This was not good. My symptoms really didn't get better, and it thinned the tissue more. I had a dermatologist who put me on Metformin crushed in Vaseline that seemed to help a little. She wanted me to take it orally, but my GI sx at the time prevented that. I have started taking Mercola's Krill oil which has all sorts of backing as an anti-flammatory. Hopefully, the combination of making my body not so inflamed inside, and the coconut oil outside will do the trick. I also have Raynaud's. I agree with eliminating nutra sweet, etc. I eat a low-carb diet. I think we now have more auto-immune than ever, and we need to look at the state our bodies are in. I wish everyone the best. Hopefully, there will be a cure someday! Thankfully, my husband is very understanding :)

Replied By Kim (Effingham, Usa) on 02/14/2012

Lynn, read your note with interest. This is an awful disease.. I wonder if like the bee's our immune systems have been crippled by the pesticides... Food for thought. What I found strange.. I didn't have these problems until I moved to a farming area. I formally lived in the Mtns and drank spring water... I did find that Scar reduction cream (zinc oxide) with the tea extract totally knocks all the itch/thining and any progression of fusion of the tissue. Should have figured this before as this is for overreactive skin tissue. It does not cure it but I don't have to apply every day, just 1 x every 2-3 days. It is strange all of us are getting this....

Replied By Julia (Indianapolis, In) on 06/09/2013

I have had LS for 6 years, following severe physical trauma and mental anguish. I am athyroid, a thyroid cancer survivor. Part of my labia is gone, eaten away. The clitoris is covered by fused labia minora. I have been using Clobestiral and hormone cream every other day. I still have outbreaks of red, thin and itchy skin with bleeding. White patches come and go. Now, I am having deep pelvic pain where my ovaries used to be. Had a total hysterectomy for severe endometriosus 30 yrs. ago. I have no orgasmic response, but do get aroused to some extent. I do not eat wheat, drink coffee and avoid sugar. I try to use all natural products. I can't tolerate underwear. I am miserable and the Dr. says "see you in a year."

Replied By Helen (Usa) on 05/01/2015

Julia,

From reading through the entire blog, it seems there is something to coconut oil. I'm going to try it. I'm "frigid" from fear of a bloody show after intercourse, intercourse that is always painful. A certain MD forced me to have a biopsy, it was totally unnecessary, as it turned out. There is another product "Yes" - has anyone tried it or heard of it? Active ingredient is aloe vera. I'll let you know if it works to help the atrophy. I feel so badly that you have suffered so much. Let us know if the coconut oil helps, try a little first near the labia and just see how your skin looks and feels before using more. Blessings, Helen

Replied By Greta (California) on 11/29/2015

Have you tried coffee enemas? They help with autoimmune diseases and LS is autoimmune. Coffe enemas are also pain relieving and anti-inflammatory. I've been doing one or more a day for two weeks and am experiencing positive results, the condition is slowly improving. I also feel that there is a connection with the disease and the gut, hours before I have a bowel movement, the itching increases. I think that if I improve my digestive health and rebuild my gut flora, this may also heal the skin.

Replied By Laura (New York City) on 06/05/2016

It is so awful that we suffer with this. I do find some help with zinc oxide. If it was a testicular problem, answers would be found

Replied By Ingrid (Belgium ) on 04/06/2017

Coconut oil works for me. Very natural.

Entire Thread

You must be logged in to love this post! Please sign in:

You must be logged in to follow this post! Please sign in: