new LS diagnosis

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

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.

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

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.

I am familiar with Dr. Mercola. Are you a subscriber of his? I was awhile back but never tried the carnivore diet. At the price of red meat it sounds expensive. So much of our fish comes out of Chinese waters (unless one lives by the coast), are you concerned about mercury or other toxins in the seafood? Hate to ask but for many LS sufferers, constipation is a problem. Has this diet given you constipation?

Do you know, or do you feel comfortable saying, what two auto-immune markers were positive? Were they Anti-nuclear antibodies and sedimentation rate? Those are the common tests. Anyway, glad you feel better.

Beverly,

I see my post is also being moderated.How do they have so many staff to decide whether to moderate? Guess, like the NSA, they have buzz words and algorithms.

Now this is downright silly.

One was definitely anti-nuclear antibodies, not sure about the other. I can't say about the constipation as I have a redundant colon (goes on and on and on) so I use coffee enemas nearly every am. What I've read on the facebook pages re: c. diet, newbies often experience diarrhea and lots of it.

So far, I haven't had a bad reaction except for a little nausea in the afternoons for a couple of hours and not this week at all. Some people experience flu like symptoms for several weeks but they, I believe, are people who have been eating lots of seedy veg. & fruits, gluten & sugar. There are toxins in plants to fight off predators and we are considered a predator. The Plant Paradox by Steven R. Gundry, M.D. talks about the lectins in the plants/fruits and how they harm our body. I've been gluten/sugar free for a few years now and after reading Gundry's book, well not the entire thing, too wordy for me, but enough to get the gist of what he was saying, I have not been eating very many seedy plants (tomatoes, peppers for ex.) for almost a year. May be why I am having mostly positive reaction to this c. diet. I plan on going back to the book and reading more.

Still no itching!

I am a subscriber of Dr. Mercola's and have been for a number of years. So far, I've learned the cost is equivalent to a varied diet if not less. Still to soon to know.

I am getting a book, The Carnivore Code by Paul Saladino, M.D. Saturday, also recommended by Dr. M. Hoping to learn a lot more.

I saw a skin doc. about my itching years ago bc my Gynecologist (who I thought one would go to for a condition such as LS.) didn't know what it was.

Mercola made a remark in the newsletter saying he was going to revisit the c. diet as it appears to help some people. He did not specify any more than that. I have tried numerous diets to eliminate the itching and my eczema and reduce wt to no avail. Frustrated, upon reading this and know I only have approx. 7 weeks left before my GP will insist I see a Rhumatologist, I hopped aboard.

A true c. diet is nose to tail. I can't eat organ meat - yet, so am using Ancestral supplements of Heart, kidney and beef organs.

I believe we are what we eat and drink and think. I have not wanted to tell my GP about my rashes knowing she would want me to see a Rhumatologist and I believe I can fix things via: diet, watching what I drink (strictly water, tea & coffee) and being careful of my thoughts.

April 27th is my appt. for more blood work to see if I accomplished what I set out to do or, if I have to see a R.

I am determined to win this one.

Sorry, I'm not worried about the mercury right now. Don't eat much seafood other than wild caught salmon, sardines. Just trying to get used to the diet. Easy so far. Sugar cravings every day but mild and they come in waves.

People who have been on this diet for some time and are strict c. report they have normal bowel movements 2-3 times a week. Important to eat the fat...this is where energy comes from.

Could it be your LS is actually eczema? I believe I have read they are two different conditions but in what way I don't know. How long have you had the eczema?

I have a friend who was told after an unsuccessful colonoscopy that he had a long colon. He has many digestive quirks. Will have to tell him it's redundant! Sounds like a daily coffee enema could cause problems of its own.

I am amazed you manage to mention people's names and book titles without having your posts blocked! Eggbiscuit and I apparently committed the faux pas of mentioning the same name you have repeatedly which has caused our comments to get moderated or blocked.

What is your secret to being treated as an adult here?

I hear your frustration. No to the LS being eczema, not. I've had LS from years and years ago, the eczema is in the last two maybe??? Under both armpits and on the end of one elbow. The itching is mild, almost no itching, it's occasional. The LS was unspeakably intense.

There are other signs of an autoimmune disease. My nails are paper thin and have high ridges in them, I do take collagen (again grass fed) but does nothing for me. I've lost a lot of hair on my head. The pain in my legs is what got me to the doc in Jan. and I've suffered the pain for more than a year. I have hashimoto and have had for over 30 years. There is a video on YouTube of a woman in her late 20's early 30's who describes curing her hashimoto via this diet!

I'm doing this diet and so far, loving it. The pain is gone, itching gone, eczema is on it's way out, 50% less.

Research plant lectins.

Yes, it seems absurd. I would think my post would have been the one deleted. PM me what you said....

That's remarkable! Well, I hope you have continued success with it. It's a wonder no one had sent you to a rheumatologist earlier but maybe you and mercola have somehow discovered the cure for your set of ailments.

I tested negative for any thyroid antibodies and have no obvious symptoms, my hair is quite thick, etc so I wouldn't be inclined to try that diet. I will continue my search to see what the best treatment for my version (we all seem to experience it differently) of LS responds to best. But do keep us abreast of your journey.