No white patches

Women's health
1

Hi folks

After a visit to the dermatologist today, she advised me that I have all the symptoms of lichen sclerosis, except for the white patches. I have been given lotriderm cream and double base as a wash and moisturiser. Have any of you used this cream and does it take away the horrendous itching ?

I have been in some pain around the clitoris area and she told me that my clitoral hood is not where it is supposed to be and is lying flat. Have any of you experienced this as well? I am wondering if the steroid cream helped this ?

Thanks in advance for sharing your experiences with me x

2

Can I ask if you've had the slits and bumps ? I also don't have the White patches. I use epederm and dumovate xxxx

3

Yes, I have bumps and splitting. I first went to gp over a year ago when my skin was splitting, it was like paper cuts, but no itching. The itching has been gradually getting worse over the past 6 months and I can't take much more of it. I have to use the lotriderm and double base gel for 6 weeks and then go back. She also said that she might need to take a biopsy if that doesn't help. Owch !!!

4

my gyneocologist told me to use double base gel for washing which i find excellent and i use Eumuvate for itch

if the vagina is sore because of the itch I use baby Sudocream

i have found all these work for me

i have not had to use Emuvate for a year since i started using doublebase gel for washing and using only non bio i.e [persil or fairy for my washing and NO softener which is full of perfumes and only use white toilet paper 

i hope some of this is helpful to you

Janette

i am in UK

 

5

I have been doing a ton of research and have found some interesting information. I have the crazy itching it's been driving me insane...so have been looking for solutions. Here are a few things that I found.

Use a solution of organic castor oil (4tbsp mixed with 2 drops lavender oil and 1 drop lemongrass oil) (Do not use essential oils straight...you must use a carrier oil like castor oil) This gives instant relief of itching and burning.  Tears heal and skin will regain it's healthy pink color again. Castor oil is very thick and odorless so it stays on the skin well throughout the day.

Here's another recipe I found for a itch relief spray:     Itch-Be-Gone Recipe

Fill a 2 ounce spray bottle to the shoulder with witch hazel.

Add the following essential oils (not fragrance oils!):

5 drops Lavender

2 drops Frankincense

3 drops Tea Tree

Label your bottle, shake it up, and use – that’s it!

Why these ingredients

Witch hazel makes for an awesome base since it’s naturally astringent and soothing.

Lavender – Lavandula angustifola, not Spike Lavender which is Lavendula latifolia, or Lavandin – due to it’s analgesic (pain-relieving), anti-inflammatory, cicatrisant (cell-regenerative and scar-healing), anti-infectious, wound-healing, and skin-healing properties.

Frankincense – also analgesic (pain-relieving), anti-inflammatory, cicatrisant (cell-regenerative and scar-healing), and skin-healing properties.Tea Tree – anti-inflammatory, antibacterial, antifungal, antiviral, and anti-infectious.

Also have read that many are seeing incredible results with diluting apple cider vinegar with water as a spray...and also drinking it.  I'm starting with 2 tablespoons once a day in some non-citrus juice as I've not researched yet what the recommended dosage is...but will get back here with any new found information.

Take baking soda baths, sitz baths or use compresses. 2 cups of baking soda in a warm bath and sit for 15-20 minutes...great relief. Or soak gauze strips or clean white cotton strips in a solution of baking soda and warm water and lay on the affected area for 15-20 minutes at a time.

ALSO...STOP ALL ARTIFICIAL SWEETENERS...some are seeing a link between these and their symptoms...so give that a try as well. 

I do not use steroids to control my symptoms...very bad side affects...so if you can avoid them by using more natural/healthy methods...it's the better way to go.  Many are controlling their symptoms and seeing healing without them.

6

Oh, and pure aloe vera gel also works well for the itching.  Make certain you are clean. A good wash is Cetaphil if you can find it...very soothing and non-irritating. Otherwise try pure coconut oil soap.  A dab of aloe vera gel and the itch is gone!  Also coconut oil is healing for the area.

7

Thanks ladies.❤

I find that a warm bath helps at the moment, so I bought some epsom salts to see if that helps too. I like the sound of the aloe gel, and I have some aloe plants that I might use until I can buy some gel.

Hopefully I will start to get some relief soon 😭

8

For me it was the baking soda baths that made a difference.  Renee already mentions this.  Also - start looking into your eating habits.  Sugar and artificial sugar have an affect.  For me it is also cheese.  And a no gluten diet seems to help as well.  

9

thank you for this wonderful, informative letter.  I am going to keep referring to this informatiion.  I didn't know about the different types of lavender...which was good to  use.

I also didn't know about the apple cider vinegar/water spray.  I do use a steroid get (not Clobetasol any more)...but I would be afraid to stop using it, even though after reading your post, I wonder if I could.

Thanks again for this important information.

10

I tried the castor oil, lemongrass, and lavender essential oils mix. It stung like (trying not to swear). I see your post is from 2 years ago. Any other suggestions? Have you had relief or learned anything new since then? I hope you are well.

11

Hi,  I have gas lbs for years, many biopsies, lesions.  Even woke up 1 morning to find that all my skin gad fused together down there - all you could see was a red line either side where the the inner & outer labias were.  I freaked!  Seen my GYN and I was put on HRT BUT, then they lowered the progesterone & then my skin which has returned became thin, irritated & had 1 big lesion on the inside.  Very painful.  Biopsies followed because it can turn cancerous.  Later, seen a new zGYN who knew a pharmacist who with prescription gave me "natural" creams - worked like a charm!  Healed the big lesion & my skin went back to normal.  Unfortunately my vulva had shrunk so had to use special "things" to stretch it.  Then, unfortunately, we moved, no job - no money for the "natural creams" so given small vagifem tabs to insert for estrogen, but nothing else, which made me wonder.  Then changed to another GYN who gave me Premarin.  Cut a long story short, I have just had a total hysterectomy - found cancer cells in the uterus.  So I was back to square one, except no need for any hormones now.  But there is something I want to share, since I do have the redness back & itching, I do do the baking soda baths, but to cleanse inside I have been using non- perfumed wipes & applying a light dab of the clobetosol cream.  I have noticed on the one side it has gone back to no redness & hopefully the other will follow.  I have tried lots of things believe me.

12

I have never participated in any forums before and until a couple of weeks ago hadn't even thought of looking up to see if anyone else had my problem. That is Lichen Sclerosis of the vulva. I am not 66 years of age and I have had this problem for over 30 years (sorry to be discouraging!) Up until a year ago I used an Eumovate Steroid cream pretty regularly and having used it for so long it has made the skin very thin and it tears easily. My Gynie told me to use the baby cream Desitin instead as much as possible and to try to cut down on the Steroid cream. The Steroid cream works much better obviously so the past year I have found pretty hard. Over the past 6 months, all of a sudden, the problem has now become sore in one area. It has never been sore before, only itchy. I have been reading a lot about Lichen Sclerosis over the past couple of weeks and someone suggested using organic honey. Now after all these years I don't want to get too excited as I have only tried this 3 times so far but it appears to be giving me instant relief! The Desitin cream also works but it takes sometimes up to half an hour to feel better. I wanted to share this with the other readers. I am now going to try the recipe with castor oil and the essential oils, Lavender and Lemon Grass. Hope this works. Something else that I find helps is to rinse well after a shower with cool water, not hot and my gynie suggested drying the area with a hairdryer. The moistness seems to aggrivate the problem.

13

Thanks for sharing Jan.  Thirty years is a long time.  That is a lot of experience with LS.  My 'turn around' started with the baking soda baths and rinses, later the borax baths and rinses.  It deminished the use of the steroid cream.  For moisture I use coconut oil.  Next to a fairly strict diet - no added sugar, no alcohol, no gluten and limited dairy. And trying to avoid stress. 

​This forum has been super helpful as well.  I'm 67. Probably had LS for much longer than when finally diagnosed. 

14

I'm new to all this. I'm 40 and have just discovered I have LS. I'm scared of what it will mean for my relationship with my husband and my health. I'm using a steroid cream but it doesn't make a huge amount of difference. I've just started applying coconut oil and that has really helped. Considering trying lavender oil too. Can anyone reassure me that this condition won't mean the end of my relationship and well being?  

15

Of course I can not give you any guarantee that your relationship will be unaffected by LS.  What has helped me is that I developed a very open communication with my partner.  Such, that he became my best support for me trying to cope with LS.  This didn't happen overnight, but with gradual understanding of where we each were standing with this.  Together we also were able to celebrate improvements. 

​Sounds like you would be helped with baking soda or borax baths and rinses.

16

Thank you for your reply. I know there aren't any guarantees. It's just reassuring to hear that others have  to continue having relationships with this condition. I feel very alone and the thought that I won't be able to have a full relationship with my husband makes me feel even more isolated. It's just so hard to talk about the symptoms. 

I am going to try the natural remedies as I am worried about using steroids for the rest of my life.

Have you got your symptoms under control? 

17

Nicely under control.  Very rarely do I use just the tiniest amount of the steroid cream. 

​I'm doing borax baths every other day (approx. 1/6 cup) and rinses after bathroom visits (3 pinches dissolved in  luke warm water in a Perin bottle)

​I try to stay away from added sugar (a sure trigger) and stress. 

 

18

Really glad to hear all is going well for you. Where do you get the Borax from? 

19

From the laudry department in the supermarket. 

20

Hello All,

This disease Lichen Sclerosus is horrible, to all that have it, men also gets this disease. Yes, it is a disease, that I believe should be funded as any other life threatening diseases and it can be cancerous.

I have had this disease for two years and there is much to say about this disease, many of us may have thyroid disease, vitamin (s) deficiency, high blood pressure and menopause all of these and others contribute to getting this disease.

Medication, for me has been a fight, my first was allergy pills, then learned I couldn't be on them to long but they stop the itch. Then came the Clobetasol (steroid), my doctor never mention to me that the steroids help thin the skin and it's not good for your organs because our body absorbs the steroids. I also purchased Emuaid Max, this didn't work for me but it did for others.

I went to to see a demotologist, I was perscribe Tarcrolimus ointment (non steroid), that didn't work. The Nystatin Tropical Powder works better than all the ointments. Not a cure but better.

I have done an abundance of research on this itch, splitting skin monster disease and this may be one of the best remedy I have read because it's natural and that's the direction that I'm going moving toward. I will use this recipe tonight and I'll let you know if it works for me.

I was very embarrassed in the beginning because its my other private area and as a woman it in our natural. We need to sound the alarm and tell everyone. Maybe we can start with Dr. Oz.

A sitz bath is great, try it with ice covering the ice with a cloth and sitting as long as you can or ice cold water, it works. 

There is a shot that there giving but I can't remember the name. 

AIways be your own doctor first

MightyPat