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Hi everyone! I’m new here but I’ve been reading for advice for awhile now. I was diagnosed with LS in November 2014 at 31 years old. When I was diagnosed, I had just finished breastfeeding and had restarted my period a couple months before. Thinking back, I believe I had symptoms about a month prior to my period restarting, but they went away so I didn’t think anything of it. When I was first diagnosed by my GYN I was given desonide and zero information. She said desonide was better for me because I’m so young. She didn’t want to start me on clob at my age. I also saw a dermatologist in between my annuals. The derm took me off desonide and put me on desoximetasone. She said it was stronger than desonide but not as potent as clob. When I told my GYN about it, he had never heard of it but kept me on it because it was working. At my next derm appt, I was really uncomfortable and wasn examined. I told my GYN and he referred me to a different derm that specializes in LS. When I saw the new derm about 6 weeks ago, he gave me a lot of info. He also scared me when he told me that his mother had this but developed squamous cell carcinoma and died from it. So now I spend a lot of time looking of LS because I’m freaking out about it which I think has set off a flare. I started using the clob which he said I only needed once a week; however, I’ve had to use it almost daily. I feel like my LS symptoms have gotten so much worse since starting the clob. I’ve been trying to cut out sugar and I’m struggling with it. I’ve also done baking soda baths, coconut oil and Yes lubricant. The lubricant and oil work at first but I’m left feeling dry later in the day. I called my derm today and he wants me to see my GYN to rule out a yeast infection. He said I could try an otc but I hate to do that if I don’t need it. I don’t want to add any more irritants if I don’t have to. I don’t have the telltale discharge, just itching and slight burning. Anyways, I’m getting frustrated. I thought I was doing so well and being proactive by going to the right doctors. I finally get to see th right doctor and he makes me feel worse. Does clob make things worse? Are there other women out there my age that were diagnosed after having kids?
1 like, 16 replies
bunny00903 kathy22439
Posted
So sorry to hear your story. LS is sure a battle. There are a lot of women on here going through the same thing. I think it's pretty normal to be scared. I will sure be glad when they find a cure.
Starlight8 kathy22439
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Hi Kathy,
When I was first diagnosed I had horrible itching and was prescribed Clob. It helped in the beginning. Then I changed my diet to low wheat and no sugar. After a few months my body started to heal and I eventually started using Clob once every month. I did notice when I would use clob, I would get a yeast infection that would then trigger a flare. I haven't used Clob in a month and I feel so much better now. I think my body has started healing on its own with my new diet and vitamin regimen (Vitamin D3, fish oil, multivitamin, probiotics). I have also purchased a bidet and have stopped using toilet paper. I feel so much better now!
I did an experiment last month where I applied Clob while I had no flare or LS symptoms. The next day after I applied it, I got a horrible yeast infection and started itching. It took me two weeks to get back to normal!
Many people on here recommend using Clob only when you have a flare. If you are not flaring and are taking care of yourself then keep doing what you are doing because your body is liking whatever you are doing. Don't let the doctor scare you, listen to your body and feed it healthy food.
Finding a diet that works and routine is the key to keeping healthy, good luck!
cynthia40883 Starlight8
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Hi Starlight, If you don't use toilet paper, what do you use? Is your bidet portable? Do you put water in it each time? What is the cost? Thx.
Starlight8 cynthia40883
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Hi Cynthia,
I bought my bidet off of Amazon for $35. It hooks to the water line on the back of the toilet and took about 10 minutes to install. What it does is shoot a stream of water onto your private parts. I went to Walmart and purchased 20 washcloths for $10. I keep them next to the toilet for drying off after I use the toilet. The bidet does such a good job of cleaning me off that the washcloths only have water on them when I go to wipe off. Even so, I use a clean washcloth every time I use the toilet and I have a container that I put them in next to the toilet. I launder them once I am almost out of clean cloths.
Do some research on all the chemicals they put in toilet paper, you will be shocked! I will never go back to toilet paper, I have gotten so spoiled that I hate using the restroom when I go out. I don't feel clean when I don't use my bidet. Also, It makes me feel better that a tree doesn't have to die just so I can wipe my behind
Starlight8 cynthia40883
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Oh also, I notice I don't have that light femine odor anymore down there since I started using the bidet. Think about it, when you use toilet paper, you really are not getting clean. You are just wiping off urine or feces and there is still trace amounts of it left on your private area. I really believe not keeping the area clean can cause flares or impede healing. I wish I would have bought a bidet a long time ago, it has been worth every penny I have spent on it!
kathy22439 Starlight8
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Starlight8 kathy22439
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Here is how I treat my yeast infections. Please do your research before taking any advice. Thanks!
1. I make sure my diet has zero sugar and bread in it.
2. I take garlic pills.
3. I douche 1 time with distilled water and 2 tbsp of paul D'arco tea. Steep the tea for 15 minutes then use 2 tbsp of it for your douche and drink the rest of the tea. Fill the douche up the rest of the way with distilled water.
4. I drink paul D'arco tea 2 times a day for 5 days.
If it is a bad infection, I will use plain yogurt inserted at night using a tampon applicator for 5 to 7 days.
bonnie92818 kathy22439
Posted
I’m 35, just had baby no 2 and still not conclusively diagnosed with LS; have had a GP say I have it, and a consultant dermatologist who speciliaises in vulva dermatology tell me i don’t. But my symptoms flare and receed so I’m still a bit unsure. I’m currently breastfeeding. Please can you tell me what symptoms you had when you were breastfeeding?
My GP gave me clob but I found it just made me feel like I was burning so I stopped using it. Since then the derm told me I didn’t have it, so now I’m back to square one looking for a diagnosis. But the person who told you about his mum dying is not cool - what an awful thing to tell someone!!!!
kathy22439 bonnie92818
Posted
I had some minor itching while breastfeeding that lasted maybe two weeks. At that point, I wasn’t having my period yet, but it did restart shortly after the itching stopped. My symptoms didn’t return until after I completely stopped breastfeeding in November 2014. They came back with a vengeance. I was fine all day, and I remember that I was making dinner and all of a sudden I had this tearing pain. It didn’t go away by morning so I made an appt with my GN and the area was almost black and was bleeding. I hadn’t been scratching. It was apparently a blood blister. You should check for any discoloration and ask for a biopsy. My GYn did a biopsy right away and confirmed the diagnosis.
Nancy_K_B kathy22439
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kathy22439 Nancy_K_B
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Hi Nancy,
I've actually read that about D3 in many places. A coworker mentioned that she takes D3 every day for joint pain related to an autoimmune and she said it's been her greatest blessing. I started taking it just a few days ago and am hopeful. I bought 1000 iu and directions say to take 1 tablet daily, so that's what I'm doing. I'm not sure how much the recommended amount is, but when I see my gyn I'm going to ask what he thinks.
cynthia40883 kathy22439
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sarb73328 kathy22439
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kathy22439 sarb73328
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My derm strongly believes that clob helps prevent cancer. He was the same doc that told me about his mother. He did say she had other risk factors such as diabetes and she was a smoker; he also said she didn't take the greatest care of herself, either. From what I've read, about 4% of women with LS get cancer, but an increased risk is still scary.
Guppy007 kathy22439
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Nancy_K_B kathy22439
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