Lichen Sclerosus Treatment

Women's health
1

Hi all,

First, I want to apologize for the spelling mistakes because my native language is Spanish. I'm really surprised to have found at this page so many women who suffer from this disease. A month ago I was diagnosed with LS, after a long search trying to understand why my skin literally splited when having sex, making it of course impossible..in some way I'm relieve to finally know what I have, even though I am 26 years old. I read in some of the comments that many of you use testosterone and steroid creams when there are numerous research indicating that on the long term this can further damage the skin despite the fact that it calms the symptoms. In my country there are no doctors to treat the disease and the few who at least seemed to know about it told me that it had no cure and prescribe steroid cream. I've been doing an exhaustive research to try to find some useful treatment and I feel very hopeful about two treatments that I've found, one is stem cells and another is called Platelet Rich Plasma Therapy, I know they are very expensive but also promise to be a significant solution for LS, unlike the usual treatments. I wish somebody please let me know if you have used one of these treatments and if it has been useful, it will cost me a lot to raise the money and travel to another country to try this treatment for myself, and after doing it If I dont get results I would feel worst than having ever tried.. maybe I just need to accept now that I will never get married or have a partner, It is so hard to understand why this happened to me and knowing what my life would be like in the future...

I appreciate your comments.

Bets Regards,

Carolina R.

2

https://patient.info/forums/discuss/i-have-had-stem-cell-treatment-for-ls-it-works-387356

3

Although you may never have the intensive sexual relationship without splitting, I believe that if you heal, then you'll be able to have sex and children too! Clobetasol to heal, barrier cream to use on fragile skin, and lots of lubing gel will probably make you able to have sex and a partner. I have had lichen sclerosis for about forty years. Forty years ago I had no diagnosis but looking back, I now know that was what I had all along! I am now 57. Good luck.

4

Thank you very much!

5

Thank you very much Mary hopefully things will go the way you say =)

6

Hello Carolina,

So sad to hear you are only 26, quite young for this illness.

I have had stem cell treatment in Genoa, Italy. The person who treated me is Dr Francesco Casabona. The procedure involves having blood taken, then a small amount of liposuction, to remove fat. These are treated and injected into the labia and anus. You are given a sedative if you wish. Dr Casabona charges E3,000.

There is also a doctor in the USA, his name is Nathan Newman, same procedure costs I think about the same, but his is a one off payment, you can keep going back free, so all you would have to pay after the initial fee is your fares and hotel.

A good ointment to use is protopic, also called tacrolimus. It doesnt thin the skin and you only need a small amount. It does help stop damage to the flesh. Also, for the itching, and as a lubricant, try pure coconut oil. It is fairly cheap, about 7 euros for a large jar, and if you buy organic it will be pure. There are no additives, it is 100% natural. This also stops the itching. I hope that stem cell treatment becomes more widely available, and a lot less expensive. Dont abandon hopes of husband and babies, Dr Casabonas first stem cell patient was a young girl who went on to get married and had a small child now. Look him up, even if you cant afford the treatment just yet, explain this to him, he may know of a doctor in Spain. I wish you well, I know how despondent this illness can make us, but for you treatment is on the horizon, and for me, it worked. I am an old woman of 62, but it did upset me when I was younger, and there was very limited help. Speak to Dr Casabona, email him, he may help, ok, god bless xxx

7

Also Carolina, the stem cell treatment only works for about 18 months, then it needs re injecting, this is why Nathan Newman works out cheaper long term. If you do use protopic, use it sparingly, start with o.o3%, and gradually add in a little 0.1%, do this over a few weeks until you use all 0.1%. if you use 0.1% straight away, it is painful, especially on broken skin. Protopic works, and after the first few weeks you only need to use it once a week or so. I cant say if you could still have sex with protopic. The good thing about stem cell treatment is there are no creams or ointments involved, so better for you.

8

Thank you very much for this information...sadly for me I cant use tacrolimus because I have HPV and that would activate the virus and the condylomas..honestly I dont even know which disease is worst...I found in my country a dermatologist that is very nice but has never treated the disease honestly I know more than him.. he was prescribing steroids he did not know that it will activate the hpv virus. I am trying to contact some doctor from another country but is not like I can have a telephone consultation..I dont know what I would do until I raise the money to go to another country is just sad the situation in third world countries like mine

I appreciate the support, take care =)

9

Caroline, is hpv papiloma virus? I can understand that, because tacrolimus or as its also called protopic, repels antibodies from the skin surface, so if you have infection also it would make it worse. Very sad that you are in a 3rd world country, but God has ways of helping us, keep praying xxx

10

Terrible to be so young with this disease. So very sad for you. I do control mine quite well without the use of steroids. Yes, the coconut oil is good for moisturizing...I do use that sometimes. However, what works best for me is to put witch hazel in a small spray bottle...it is an astringent and skin conditioner. It can sting a little but that goes away quickly and it helps you heal. I use this several times per day after toileting and then for the itching I apply a small about of 99% pure or higher organic aloe vera gel. It also improves the skin after you have used it for awhile. I haven't tried this yet, but just ordered a jar of manuka honey. Another LS sufferer has said she applies a pearl size bit and rubs it in well every night at bedtime. She has kept her LS healed for 3 years. Manuka honey has great healing properties which is also supported by the medical field. It is quite expensive ($30 to $40 for a small jar)...but it lasts a long time...and not nearly the cost of the stem cell or other treatments. These are natural things to try and may very well help you. Keep in touch on these LS forums...lots of information...lots of us looking for answers. 

11

Rennee wouldnt it be wonderful if there was a natual cure, live in hope x

12

Hi, Carolina,

Best thing to get rid of HPV is black cuman oil. One month and it's gone. But..you have to buy good one from Egypt or Saudi Arabia.

I am going to try it soon to cure LS.

Good luck to you, dear!

13

If the witch hazel stings too much then go to two pinches of bicarbonate of soda in an 8 oz. spray bottle and try that. Many have good results also with this solution after toileting. It is important to keep very clean. Also for washing try using only a pure coconut oil or olive oil soap without any added perfumes.

14

They say there is a cure for everything in nature...the trouble is finding it. I keep researching and trying different things. I do not do anything that I believe would be harmful and do keep regular doctor appointments. My doctor lets me do the things I'm doing as I'm having about the same results as those that have gone the steroid route. This disease is much more prevalent than has been reported as it has been misdiagnosed so much.  One report I read says that as many as 1 in 70 women will develop it sometime in their lifetime. Definitely the scientists and medical field need to sit up and take more notice.

15

I know, dont they just! Its an awful illness, if it was 1 in 70 men there would be a cure, take it from me, same as if men had babies we would all be extinct lol. I think some doctors see it all as part of a womans life, like the menopause, your a woman, get on with it! You know Renee before they find a cure they have to find a cause, should be interesting. I used to go on forums, trying desperately to see if any progress had been made, I have shed buckets of tears over LS, we all have, its just a devastating disease. I find it is worse when I have acid stomach, anyone else notice this?

16

Do you ingest it or apply it? 

17

You made me smile!  and chuckle!  I've been suspicious of the hormones in birth control pills and in the prescribed hormone creams as they come from an animal and not human or plant source source.  I had my first serious flare after using the hormone creams. Aids came from chimpanzees and some veneral diseases came from cattle and sheep...so who knows.  I've read alot about gerd (acid stomach) and the lichen also...and I have mild gerd...so it's possible there is a connection.

18

You made me curious so I investigate black cumin oil.  If applying it topically they say to mix it 50/50 with jojoba oil so as not to cause skin irritation.  I would think hexane free castor oil would also be a good choice.

19

Hello Renee,

You know I come from England, I think you are from the USA. We are a small island here, with well over 60 million people, and our water is cleaned with silicates every time it is released for use. Tests have shown that our tap water contains so much female hormone from the pill it has made male fertility fall by , well 10 years ago it was 25%, so it must be more now. Also chemicals are added to clean the water, and disinfect it, and aluminium, aluminum to you, is also added. It is a well known fact that aluminium causes alzhiemers and dementia. Look this up, about 20 years ago at the water works in Camelford, in the South West of England, an employee accidentally put a thousand times the prescribed dose of aluminium in the water, this went undetected for a few days, and was of course drunk by the inhabitants. Camelford has an epidemic of dementia and alzhiemers, that is a known fact here in the Uk. I am not sure if it is in Devon or Cornwall.

20

Also Renee, I have read things over the years, and on here, where its said LS may be a sexually transmitted disease, or the result of gnat bites, which well it might. To throw a spanner in the works, why is there a high instance of LS amongst Downs Syndrome sufferers? Many have LS from childhood. But that does not rule out the two other theories! X