Hi all - just joined this in the hope of discussion and advice from fellow LS ladies.
I'm 30 and was finally diagnosed with LS last year following years of itching and treatment for excema and thrush. I have quite a bit of fusing round the clitoral hood (I think the term "buried tissue" was used) and some atrophy on my inner labia but the dermatologist and gynae that Ive been seeing seem happy that I have it under control.
I had a baby 3 months ago and the LS had been dormant during pregnancy has flared up again - I've got some white patches and itching on my clitoral hood again. The gp I saw was lovely and said just to keep up the clobetasol and she would refer me to consultant if needed but everything looked ok to her.
I just feel so scared and worried about the future. I'm worried I look like a freak down below (especially after a vaginal delivery) and that I'll lose my sex life. At the moment I have an active enough sex life but I know there's a bit of loss of sensation and my husband is thankfully very patient and gentle.
I'm sorry this has been so long - I'm just struggling a lot at the moment and I don't really know why!
Hi Pollyanna,
God Im not surprised you are struggling - you have a new baby!!!! Stress seems to effect LS in a lot of people so maybe you are suffering more at the mo. I suffered horribly with the itching / uncomfortableness of LS but it has improved dramatically since I changed my diet. I am sugar / dairy / gluten free (well most of the time!). Bit of a bugger to start with but you do eventually get used to it. So worth it to have happy nether regions. You have to watch out with processed food because there is lots of hidden sugar so you have to read all the labels. Once you get on an even keel you can have little treats and it shouldn't bother you. Good luck!!! xx
I was diagnosed about six months ago I never had any itching but did after my biopsy I had a growth on my clitorus witch they thought was cancer after finding out it was LS I felt so disgusting with a lot of soul searching I have gotten some emotional grip on things I try not to think about it but I am so much better then I was my skin over my clitorus was so thick and white now it is almost gone I stopped eating gluten I take wheatgrass everyday coconut oil pills biotin vitamin D and air borne immune support everyday and I follow the clobetasol (don't know if I spelt that right) ointment the way Dr Goldstein instructed in his webinar I try to think about it like I am strong enough to go threw something like this and that's why I have it we always have are down times but I don't let it consume me if I'm down about it I will cry if I need to but then move on and stay positive I hope this helps
Forgot to mention also pro biotic very important I take kid culturelle and I will drink yukult it helps a ton
You have a lot on your hands right now, with a three month old baby and then trying to cope with LS.
You are controlling with Globetasol already. (apply thin layers) (do read up on Dr. Goldstein's thoughts) With this I added baking soda rinses and baths. (three pinches in a spray bottle that you may already have received in the hospital) (1/3 cup of baking soda in the bath) After every bathroom visit I rinse with the spray bottle. Dab dry and apply coconut oil for lubrication. Every other day I take a baking soda bath. All helps to keep LS under control and make your life more comfortable. It has helped me to make the fusing gradually disappear. Clitoris almost in the clear.
Hope this helps you. If you have more questions, just ask.
Thank you for all the suggestions - I'll definitely give the baking soda a try and see if that helps. I just worry that I've had a bad case of fusing for years as I went untreated for a while I think - the only part that seems affected is the clitoral hood which just seems to have hidden my clitoris. I still have feeling but it's slightly reduced. So if baking soda helped with that, then I'd feel more positive. I think its the fear of the future that's getting me down. I worry about not being able to have a normal sex life when I'm older, or that this flare up will cause even more fusing and I won't be able to have more children.
Hi Pollyanna,
Just be careful with the use of Globetasol. Apply thinly. Try to put some relaxing time in your daily schedule and try to get enough sleep. Not easy with a three month old baby, I know.
I've cut out sugar, gluten, alcohol, caffeine, most dairy. (cheese has a negative affect on LS for sure, I now know) I follow a mainly alkaline diet. This is making a difference as well. Lots of vegies. Beneficial for the whole body actually.
The future should not look so bad, since you are already controlling LS at age 30.
Thanks again Hanny. That was very reassuring to read. I will make sure I'm applying thinly and rubbing it in. I'll watch the Goldstein video too. Ive been in remission for a year so u
Posted too soon! I'm hoping I can get this flare up under control without too much fusing. Is it the scarring that leads to cancer or the untreated lesions? The itching is better today but the White patches are still there.
That is what is being said - scar tissue could become a form of cancer. But it doesn't happen very often, as far as I know.
The white patches will not disappear overnight. I just spent a whole year working on LS. I was totally fused up and looked like a barby. Since October last year I have been diligently working on reversing this. (abreviated story) Now I'm feeling my clitoris again. At the time I did'nt think that anything could be reversed at all.
I encourage you to take good care of 'the bottom'. Rinse with baking soda water. Moisturize with coconut oil, or emu oil. Etc. And watch your food habits. LS will always be there, but controlled. Give it the least bit of chance to allow flare-ups from happening.
Browse through various topics of discussion. Well informed about LS you can sooner nip problems 'in the butt' (ha)
I have this and have found that about a 1/4 teaspoon of 99% pure Aloe Vera gel relieves the itching. Took me many years to find this. This also went unto my lower legs and into my mouth where it is called Lichen Planus...both as you know are auto immune diseases. There is one way that you can very possibly kick it...that has actual medical science behind it...do some research on fasting. I am jending a 5 day fast tomorrow morning...did this with my doctors blessing. 5 days with no food...only the juice from 2 oranges and from 2 lemons per day...lots of water and some non-caffeine herbal tea. I have already seen remission in my symptoms...which I did not expect so soon. Am hopeful that I will be cured and will post again in a couple of weeks to let you know how I'm getting on. Note: the fast while difficult was not as bad as I expected. I kept busy to keep my mind off from food and kept the fluids going all day each day.
Thanks again Hanny. I'm still uncomfortable but getting my feelings a bit more under control.
Is there much difference between the clob cream and ointment? I was using the cream when i was diagnosed but the most recent GP gave me the ointment - she said she didn't know which one id been prescribed before but that they both had the same potency. Is the change something I should be concerned about?
Thanks for the suggestions Renee - I'm happy to do some diet modification but I'm afraid fasting for 5 days whilst caring for a young baby is a total no go for me and probably something that wouldn't be advised by a doctor.
I understand. There is a group trying a two day fast...watch for their results on another forum. It may be something you will want to consider down the road. Do try the baking soda rinse...they say a couple of good pinches in a spray bottle of warm or cool water to rinse with is very helpful. I will try that in the future should I have another flare. Right now I'm doing pretty good...hope the fasting has helped. Also, once lesions or ulcers are not so bad use the aloe vera gel for the itch...it is an immediate relief. Wish I had found that much earlier. I use the 99% or you could even use fresh from the plant. Good luck with your little one...enjoy...they are little for such a short time.
Your doctor did you a favor. The ointment seems to be better than the cream. My doctor double checked to make sure I use the ointment.
Hi Pollyanna135! I must tell you I was feeling sorry for myself so I came to our site. I have had LS and LP for about three years. My vagina kept totally closing on me and my Specalist would put me under and reopen it. Then I had to go weekly so he could retear with no pain relieve my vagina so it would not close. But after a few weeks it did. We had three surgeries and the last time I saw him he said we need to wait until the flare goes away. But it never does. I have it in my mouth and it hurts so much. The dentist still cannot do anything with my mouth because the minute he touches my mouth it starts bleeding. I have at lest 100 spots of it on my stomach are, on my shoulders and bottom. I am soooooo very depressed. I show the world I am a very happy 60 year old wife,mother and grandmother! I don't care if the house gets clean. I have not done any of my hobbies(which I'm known for. I don't want to talk on the phone. Even with my daughters whom I usually visit on the phone foe three hours of a time. I just feel so don't that I want to sit in a dark room and watch TV. So what shall I do?
Sad story Charlotte. It tells me that you are sitting in a very deep valley. I've been in that valley too. However, somehow I crawled out of it. Looking back, I don't understand how I managed. Perhaps I had a bit of luck here and there.
I have LS and LP as well. For the longest time I have been brushing my teeth with baking soda. A small bowl sits next to the sink, in which I dip my toothbrush. Sometimes I still get bleeding, but mostly it's okay. The gums don't look too too bad.
Don't know whether the two of them go together, LP and LS. Don't know which came first either. Very late diagnosis for both. Was totally fused up in October last year and something needed to happen. A dilation procedure was done. Afraid of getting an infection I started to rinse the bottom with baking soda water. (Looking at that small bowl with baking soda, I had a thought. At one time my mother used baking soda to treat infections.) LS calmed down, opening stayed open. You may call it luck.
My life is slowly picking up it's old speed, so to speak. If you wish to send me a personal message - feel free to do so. Ask questions, anything, if that will help you in some way.
Oh, Charlotte I do know how you feel. I've had this for about 6 years and am finely seeing some relief. Are you trying the baking soda in a spray bottle for the private area for cleansing after toileting? Many say that helps. I've done witch hazel in a spray bottle to speed healing...it stings at first...but does seem to hasten healing for me. Also, once you are not so raw...try a dab of 99% aloe vera gel...it stops the itching immediately in the private area. I find that all toothpastes, baking soda and essential oils make my mouth worse. Nasty as it sounds the only thing that I have found non-irritating is finely ground activated charcoal from bamboo...you can purchase it online. I purchased super soft toothbrushes online and I put about a quarter tsp of the charcoal in the palm of my hand and brush. You can rinse with plain warm water or try a bit of salt. It's a bit gritty, and messy...but does do a good job of cleaning your teeth and does not make your mouth worse. I've just done a fast...and have seen a great deal of improvement...there is research that says fasting can put this in remission or cure it. I did 5 days...but some are having results fasting only 2.5 to 3 days. There is a group in another forum on this site doing a 2 day now to see if they see a positive change. You don't feel like eating when your mouth is so sore,..so may be a good time to give it a try. I did lots of water, up to 200 calories a day of juice, and non-caffeine herbal tea. Since I did do 5 days I did consult my doctor first who gave me the go ahead. I've had no new ulcers in my mouth...but I'm not completely healed...but all is better so I'm hoping to see additional improvement. I've only been 2 days off the fast...so am not expecting immediate results. The aloe vera gel liquid that you drink also gives some relief in the mouth...but I understand that it's very temporary. Only people who have this know the real misery of it. Keep trying things and go back to your crafts...you need to keep your mind busy. Hugs! Rene'e
Thank you so much for replying to me so quickly. I tell you I never knew of this disease and man alive it has changed everything in sight to find someone that can help and get a better life. I just need to se someone in the medical to help me get better
,I'm very tired tonight I will write more tomorrow
Tired here too. There is another forum you should visit as well. I will try to find it tomorrow when I have some time and send you the info. A woman there has been all over the world searching for relief and has some great information. Berberine is one supplement you should try...read up on it. Take care.