I was recently diagnosed with LS by a Gyn/Oncologist I saw for vulvar cancer. My Ob/Gyn had no idea what I had, said she had never seen anything like it. I have been doing some research, and actually found on this forum a suggestion of using olive oil. Well, I tried that and it was so messy! Then my friend said her gynecologist told her long ago she should use coconut oil to maintain healthy skin. I used it for less than a week, twice a day, and when I saw the oncologist for surgery, he was amazed at the difference. It not only eases the burning and itching, but actually brings the skin back to looking normal. I apply it in the morning, after all my morning constitutionals, and before I go to bed. Wash lightly to remove any urine and then apply the coconut oil liberally. I will continue my regiment and update with any changes, good or bad. Good luck, ladies, and thank you for all of your suggestions and comments. BTW, I wonder if yeast infections have anything to do with LS? When married to my first husband, I seemed to have one constantly. Back then, they didn't think to treat the man when the woman was being treated.
Hi Karen, I'm so glad you have found relief with coconut oil. What brand did you buy. I want to try that. Thank you.
I started using coconut oil about 3 years ago as a moisturizer for atrophy. Two years ago I was diagnosed with LS and have continued to use the coconut oil along with hormone cream, steroid ointment, Nystatin (for yeast), and now Tacrolimus (the latter prescribed by a dermatologist). I have never noticed much difference using the c-oil but it just occurred to me it may be why my LS symptoms are not as bad as others describe. Who knows? When I told the gyn who diagnosed me with LS that I already used c- oil she said "we love coconut oil" , but "only the steroid would control it" so it was important to use it. Some women say olive oil clears all their symptoms. I've tried that with no better results. I think doctors recommend moisturizers based on what their patients tell them works for them, not because there are any medical studies proving their efficacy. But I'm wondering why your gyn said she had never seen anything like LS before. I'm not clear on what you've written. Did she think it was cancer and refer you to an oncologist or were did you already have that diagnosis? Or did the oncologist say it was LS and not cancer?
Yup...he was probably the culprit. It happened to me too.
I have been using organic, virgin coconut oil that is cold pressed and unrefined. I get it at Sam's Club, Members Mark brand. It certainly has given me alot of relief and hope it will help you as well. Karen
Beverly; I'm not real sure what she had never seen before. At the time, I believe she was talking about the cancer as that was when she scheduled a biopsy. However, she never mentioned LS, but the oncologist mentioned it right away during the initial exam. The biopsy came back with vulvar cancer, which was when I was referred to the gyn/oncologist. So, lucky me, both were found. Still recovering from surgery, caught the cancer early enough that at this time no other treatment is scheduled, so no actual treatment for the LS yet. The coconut oil just keeps me comfortable and out of any flare-ups as well as keeping the stitches from getting too dry. Finding this forum was a great help for me; we ladies must help each other as best we can. Karen
Jeri; I'm thinking that may be a contributor as they say LS can be a result of previous skin damage. Lots of damage when you scratch to bleeding with a yeast infection!! Had one ALL the time in my young married years. Good luck to you, hope you are doing well. Karen
karen, did the oncologist tell you that the cancer developed because the LS hadn't been treated? That's the only LS/cancer connection that I have read/heard about. Do you have any idea how long you had the LS or were you without symptoms until you saw the gyn? When I was first diagnosed with atrophy the gyn told me if I didn't use hormone cream all sorts of problems could develop including cancer which really shocked me. I went home and looked up any possible AV/cancer connection and found none. I wrote to her asking for a reference, a link, anything so I could better understand the warning. She then claimed she never said it and left the choice with me to use hormone cream or not. I did not because of BC in the family. Three years later I was diagnosed with LS by a different gyn who took the time to clearly explain that not using a steroid with LS ran the risk of cancer developing. She also said in my case the LS was a result of too little estrogen. Some doctors don't seem to know just how important it is to take the time to properly inform their patients and to keep literature on hand to help us better understand the chances of disease developing and to make informed decisions. I hope you have a quick recovery. I would think that stitches would create an itch. It's great no other treatment is required and that you're responding so well to the c.oil. Wonder if the tissues with LS were removed also?
Bev; I'm not sure if the LS caused the cancer, but it all seemed to start about the same time. Don't know how long I have had the LS, but the gyn/oncologist took one look at me and told me I had it. One week after the surgery, I managed to "pop" the bottom stitch. Went to the ER where I was told to just keep it clean and dry. ER Doc said I needed to wash every time I went to the bathroom and not to use any coconut oil or anything else on the wound (which was the size of a dime). Well, I followed his instructions until I couldn't take it anymore. Seemed like when I washed after the bathroom, I was doing nothing but irritating it. The open wound got bigger (size of a 50 cent piece) and to the point I could not sit down due to the pain. I don't have much itching, but the burning felt like I'm straddling an open fire. After about a week and half of dealing with that, I began putting the oil around the wound, and within a couple of days it finally began to heal. Go back this Tuesday to see the oncologist, and I expect we will have a nice long chat about all of this. Then, I will schedule with my gyn here and inform her of this mess and hope she has done some research and can help me more than the coconut oil. I believe she has never had a patient with LS and knows nothing about it. Good luck to you, may relief come your way.
Karen, Did you see you dr. today, Tuesday? Can you share the result of the visit? How long was it between when you went to the dr. and they finally diagnosed vulvar cancer? Does cancer run in your family? How is the surgical site healing and have you had to stay in bed post-surgery? Sure hope you're getting better.
Sorry I have not replied sooner. Surprise, surprise! When I saw my gyn/oncologist, he informed me I never had cancer. Pathology report came back with NO cancer, but positive for VIN-II. Cancer does run in my family, so this news was wonderful! I live in an area where healthcare professionals come for a couple of years and then leave for the big cities, so it's really not surprising that I would get a wrong diagnosis in the first place. The original biopsy was read by two different labs, but still wrong. Post surgery, wish I had taken it easy in the beginning. I felt so good right after the surgery that I went about my business shopping and cleaning and my everyday routine. I ended up on the couch for what seemed like forever as I could not sit down even in an easy chair. Had I taken it easy for 3-4 days right after surgery, I'm sure I would have done better. As for the LS.......asked my gyn/oncologist (whom I trust far more than any physician in my town) about using hormonal cream and was told that he does not recommend. He said it does not help and sometimes makes LS worse. So, I have continued with the coconut oil and my surgical site is healing very well and the LS is under control. The burning sensation is gone and skin color is back to normal. I will continue with this treatment and see the gyn/oncologist again in 6 months. Thank you, and hope all is well with you.
Karen, I am so glad to hear it was not cancer but neoplasia. And I hope the surgery fixed it. I can't sit down and have had no surgery. The LS is in a place that makes sitting quite uncomfortable. So, if estro cream does not help, then what will improve the atrophy? Coconut oil does not help with the pain (my primary symptom) although it helps thousands with itch and dryness. So, you are still on clobetasol? Thanks for responding.
I am not using clobetasol, just coconut oil. I use virgin, cold-pressed, unprocessed. It is working very well for me. I apply in the morning after showering and at night before bed. I had burning and skin discoloration before using and seem to be fairly normal at this time. My gyn/oncologist requested that I continue to use and not any hormone or steriod creams until my next visit, as he would like to see the effects. In researching coconut oil, it does have anti-fungal and anti-bacterial properties. Wish I could tell you what would work for you.
Found what I was looking for. My gyn/oncologist told me about this mixture: 4% Lidocain cream, 2% Benadryl cream and 1% Hydrocortisone cream. He said if the coconut oil quit helping to try this.
Hello, I have had INTENSE itching around the hair line of my labia, both sides for more than 10 years, never had it diagnosised, but within the last 2 years, it started spreading back towards my anus. I started the carnivore diet Wed., Feb. 26th, 2020 and within 3 days the itching was much less. Today is the 6th day on this diet and the itching is gone!
I was a health food junkie, all organic including meats & chicken, wild caught fish, seafood, tons of salads. I tried lots of remedies for my condition. My eczema under my arm pits and on one elbow is also going away on the carnivore diet.
I hope this helps someone.
Does this mean you are avoiding gluten or all carbs?
I just looked it up. You are not eating any vegetables or fruit?? Not sure if I would want to do that, but if it's made you well.... Have you tried eliminating just the carbs instead? Have you run it by your doctor?
No, have not, but early Jan. I was in so much pain, I saw my doc. and she did a blood panel. Everything normal but two markers for autoimmune disease and she wanted me to see a Rhumatologist. I asked her to give me 3 months. The first 5 weeks I tried intermentent fasting with no luck. Then, Dr. Mercola put out an e-mail saying he was revisiting the carnivore diet as it may be beneficial to some people. I jumped on that band wagon Wed. last week as I had gained more wt. and was in more pain daily. Feeling much much better. Strickly meat and dairy (cheese, butter), fish. No grains, no fruits, no vegetables. I've given all my salad fixings away. My doc. does not know I had eczema but that is disappearing. She also does not know about my LS which was diagnosised by a male skin doc. She does not ever need to know either as that is completely gone! I'm in my 6th day today, no itching anywhere, PHEW -- what a long ordeal. Looking into the carnivore diet, I've read a LOT of healing stories.
robin, which people was Mercola was recommending it for? I assume you have done some research re needing fiber and certain nutrients to remain healthy. It sounds as though you have eliminated something in your former diet that was setting off the AI reaction. Would be most helpful to find out what it is, though as it's only been a week you'll have to continue a bit longer to know if your clear skin continues. Let us know if you are able to pinpoint what it is that caused your itching. It's really perplexing why you would not be sharing your health issues with your GP as that is the person who should be the most informed. I request that any specialist send copies of the results of visits to my GP. Otherwise he would be at a major disadvantage and could be suggesting treatments that are contraindicated. It also is an opportunity for GPs to keep up with what specialists are currently recommending. If you aren't comfortable with your GP you should look for a new one; it's a really important relationship. Good luck!
Total mystery why my comment is being moderated. I mentioned the same person that you did. Other than that nothing even remotely unusual. The big brother aspect of this site is troubling.