Young and new to LS

Women's health
1

Hi everyone! I just read so much of this forum and decided to share my relatively new and awful experience as I sit in my baking soda bath.

I'm 28 and aside from chicken pox, common colds, and a flu here or there I have only ever had one health problem. It's called tinea versicolor and its when you get white or pink spots on your skin (my back mostly) that spread like crazy and are hard to get rid of. Its basically a skin fungus and I have read of another person who has that and LS so it makes me wonder.. I am very thin and work out/ do zumba classes regularly, and I eat pretty well but splurge on weekends with pizza, bagels, chips, etc sometimes.

A few weeks ago I noticed some on & off crazy itching in the labia minora/ clitoris area. I googled and thought i had bacterial vaginosis or something but i knew i had no discharge so it seemed strange. Ive never had ANY issues down below. Finally it was really irritated from me fussing with it and I took a look in the mirror a few days ago.. White!!! I could immediately tell this wasn't just some rash and LS came up in searches. Sounds just like what I have and I think there is some fusing already, as well as bruising and tears in the skin.

Researching was scary.. learning about the cancer risk, not being able to have sex or live a normal life, having a disfigured vagina.. I'm getting married in a few months!! Then there's the health care aspect. I'm in the US and with my typical insurance plan that I pay for monthly, I first have to spend $5000 of my own money and after that half of my medical expenses are covered by insurance. (I hope you ladies in UK have it better) I can in no way afford to spend even the hundreds to get consultations with doctors. From my tinea versicolor I already know they don't help these incurable issues anyway. I am going to visit a Planned Parenthood clinic in 2 days, which is where I used to go for annual exams before I had insurance. I guarantee they will have never seen LS before anyway but I'll give them a chance. Also trying to look Into a local naturopath.

I have used coconut oil for 2 days with some relief from the irritation and just bought castor, baking soda, borax, and lavender. After sobbing last night I feel hopeful from reading this forum. I'm still worried about what the future holds for me but I think catching this within weeks of it developing will be in my favor.

I noticed in other forums castor oil is HUGE. Is there a reason no one here uses it?

Do you ladies think it is imperative that I get the prescription cream to manage this?

And this one sounds silly...... PLEASE don't tell me I have to give up my glasses of sauvingnon blanc (wine) on the weekends?

Thanks for reading and have a good evening.

2

From your story I think I can say that you caught the LS early.  That's a plus.  From the forum you probably already learned that meanwhile many of us here are using baking soda and borax to keep things at bay.  I myself no longer use the globetasol either. 

​Since your health insurance is very taxing you have nothing to loose but first try these simple things like baking soda and borax.  And watch your sugar intake for starters. 

​Let us know how it goes.

3

I'm not much of a sweets person but there is sugar in things I eat regularly such as yogurt. Do you think its worth getting rid of?

Also with the natural remedies, do you find that they keep the LS from spreading in addition to the relief they provide? Thanks for.your reply!

4

Hi Bec,

I've been on this site since March and so far I haven't seen any info about castor oil.  I've had good luck alternating with emu, coconut and almond oil, though. 

It's good that you are going to a clinic to get a doctor's opinion.  It does sound like you have LS, but don't dispair - you don't need to spend tons of money and have multiple doctor visits.  Many of us were diagnosed visually and didn't get a biopsy.  If it is LS, you can manage and improve it with all the natural solutions you will find on this site.  I personally don't use steroids because of the side effects, but some do.  With care, you will be able to live a normal life, and the itching, fusing and white areas will stop/go away, so don't give up.  It just takes time and diligence.

Actually, borax (sodium borate) is an anti-fungal treatment, so soaking in a bathtub with about 1/6 cup of borax might help your back as well.  Read the thread," An Experiment with Borax" for more info on topical use.

Hang in there.  It's always scary at first, but give it time and you will see big improvements!  One other thing--there is only a slight increase in the risk of cancer, so don't worry about that.

5

My experience is that the natural remedies keep LS nicely under control. 

​Sugar has for many been a sure trigger for LS to act up.  I myself also eat gluten free, alcohol free, caffeine free, mostly dairy free except for a good plain yoghurt. 

​

6

Hi Bec, sorry to hear you've probably joined the LS club! 

I had symptoms for about a year before I was properly diagnosed. I'm also 28 and was so miserable and depressed about it that I have done my share of sobbing, and at my lowest felt like throwing myself in front of a bus...

The steroid cream I was given helped immediately - the itching and irrigation was a lot better. It took me a while to figure out how to use it right - small pea sized amount after a warm 20 minute bath - but after three months it has really kicked my LS back and my skin looks pink and healthy 😊

Research also suggests the regular use of steroids reduces the cancer risk: http://www.afr.com/lifestyle/health/womens-health/simple-method-to-prevent-an-intimate-cancer-in-women-with-vls-20160411-go40xv  ;

When I was diagnosed, I immediately went gluten and dairy-free, and reduced sugars. I don't know if this helped my LS, but it made me feel like I was doing something positive - and an unexpected result was that I lost 13lbs from doing so, which made me feel better and healthier in general. I never gave up alcohol (I still have a glass of red when I'm out with friends!) and I recently fell off the bandwagon big time since I've had a lot of parties and work functions to attend and I indulged in ALL the food and wine there was - and it hasn't caused my LS to flare! 

In fact, it's now 3 months since I was diagnosed, and I've gone from thinking about LS everyday to not having to worry about it. I try to apply the steroid cream a few times a week, but I don't have a regular routine, I just do it when I feel like it. From where I was to where I am now I never thought I'd be able to say that. I feel quite lucky as I know everyone's experiences differ.

In terms of oil, I tried them all at the start. I like coconut oil, emu oil has a rich, silky quality which is nice and soothing, castor oil felt much gloopier but provided more of a barrier, neem oil is dark in colour and smells unpleasant. I don't really use any oils anymore as I don't feel the need to. 

Above all, I try not to stress (had four very stressful years and I'm now on the other side which feels good). It's easier said than done, but being mindful of stressors and having a good laugh with friends really has helped me, both with the physical symptoms and emotional ones too 😊

I hope you can find a professional who knows about LS and can offer you their advice.

Best of luck with your wedding 😊 I hope you have a wonderful day.

7

this was so helpful, along with the link. Thank you steph. It has encouraged me to at least get the steroid cream to have it in case I feel the need for it. Do you know the name of the one you use? It's also so nice to hear from someone who has been able to manage things. When I first googled around it seemed like there were no success stories! I hope that you can continue enjoying the success you've found, and thank you again for reaching out.

8

No problem Bec. Part of what really got me down was the lack of positive experiences available online too. I try to remember that not many people will go online to discuss this stuff if it isn't causing them any problems!

The steroid is Clobetasol and it's in ointment not cream form. In the U.K. the brand name for it is Dermovate. It's super high potency, but don't let that scare you, you'll only use a little at a time. Some people worry it will thin the skin with long term use, but my research and gyno say this is a misconception. I know everyone has to make their own decision which I respect, but I really find it helps so will continue to use it long-term. Use a mirror when you apply it as that helps you make sure you're putting it where it needs to go, and you can see changes and progress smile

Warm baths are also really good for me. I chuck in some Dead Sea salt too and sit in a shallow bath before bed when I have time. I had one bad flare before I got it under control and the bath followed by the steroid really calmed everything down again.

Thanks for your kind words 😊 Let me know if you have any questions at any time.

9

Oops one more thing, my doctor told me to apply it not often enough and my gyno told me to apply it too often! I just found my own groove and did what worked for me. Initially that was once - twice a day, now it's one - three times a week. I just go by how I feel, but I still make sure to apply it at least once a week, even if I feel fine, as it's a maintenance dose to keep it at bay.

10

An update!

I went to the doctor yesterday evening. I had been feeling so much better mentally and it really set me back. The first doctor said she didn't even see anything so she asked another to come in. 2nd doctor said she definitely could see the white skin and after 15 minutes said maybe it was a skin condition. I then shared what I thought it was and she agreed. She said it could be that, in the early stages. "Probably". But she was acting like it was no big deal! I shared my fears with her and she said she had never heard of the fusing and had never seen that. (She mentioned seeing one case of lichen sclerosus recently) Didn't really comment on me being scared that I wouldn't be able to have sex some day. I told her this is very common from experience I have read online. She then kept insisting that anyone can write anything online and I said I've read it a LOT and she said it was probably one person going around making it up and then condesceded me by showing me what medical websites look like and to only trust those. Then she looked at some websites and said there's nothing about fusing and it basically doesn't exist.

At the beginning of the exam she warned me against putting any steroid cream on vulva and then after we deduced it was LS of course she prescribed me the clob 😂. I told her I'm going to try keeping things under control with natural remedies and I'll just have that if I need it one day. She said I should see a dermatologist. The first doctor had never even heard of it and imagine if she was the only one when had seen me when she was denying there was anything wrong with me?

So basically I taught them about LS and then had to pay $120 for nothing. When you are scared and people are telling you that things don't exist when you know they do its very defeating. I could barely hold back my tears until I got to my car. Everyone told me I should see a doctor and now I really regret that I did.

The plus side is that the baking soda and castor oil with lavender have helped so much. I think i have such a slight case of LS or am in the earliest stages anyway and I am willing to bet it could go dormant for a while but I know this isn't the last I'll see of it. Just wanted to share that, I know you can all relate to frustration and a waste of money at the doctors office.....

11

I too have been at doctors who had never seen this.  You feel enormously helpless.  The thing is that many do not know about LS.  It's almost the lucky draw when you do find doctors who do know. 

That's why this forum has been such a support for many.  Since the medical world does not know all, we have learned from each other. 

​You can use the glob, in thin layers and not too often if your LS is not too bad.  Using it lots is not recommended.  It needs intervals or it won't work at all anymore. 

​Most relief I have had from the baking soda baths and rinses, later the borax.  Plus coconut oil as lubricant and to keep the layers seperated. 

Best time spent is on this forum, to learn as much as you can about LS.

Wishing you well.