Lichen is taking my life need help

Dear Dorotha, please try not to worry too much.  Do you have the Clobetasol (steroid cream)...and also you might want to try the paste made up of Borax (in the laundry section) and soda paste and apply it on a damp cloth to the area for a short time, to see if it helps.  Keep looking on this forum, much help here.

Dortha67,

  I am so sorry you are feeling this way. We have all been where you at, at some point. It is such a shock when you first learn you have this illness. There are so many unanswered questions and this is something I bet didn't even know existed! Well, the good thing is you have come here to learn from people who have been living with this for years, so don't be afraid. When you learn what it is your body is needing, you too will be able to manage this disease. When I was first diagnosed I was living with itching on my clitoris for 6 months. It was so embarrassing! It wasn't until I started Clobetasol that the itching finally went away. I now manage my LS (Lichen Sclerosis) through diet and managing my stress. It has been a long road and there are still days that I do struggle but the main thing is to never give up hope!

Here is what helped me figure out how to take care of my body and what I call the LS Protocol:

1. Start a wellness journal. A journal can help you track symptoms and examine what could be causing inflammation. I think the journal can be the key to finding what works for us individually. Let your inner scientist out, and make your body the subject because you are the only one that has the answers that your body is needing.  Here is what you can put in your journal:

Everyday write down:

What you eat and drink (include medicines and vitamins)

Every product that touches your body (soap, laundry detergent, toothpaste, lotions...ect.)

Your stress level.

How much sleep you are getting.

How much exercise you are getting.

Describe how your body feels that day. (any aches, flares, sluggish, write down all symptoms from your entire body).

Either take pictures or write a description of your LS areas so you can track if the LS is getting worse. (Can be done once a week).

2. Alter your diet - no sugar, low carb, dairy. Look up Paleo diet, Autoimmune Protocol Diet, Leaky Gut diet.

3. Stop using all soap on your privates- your privates only need to be gently washed with water.

4. Rinse with water after using the toilet and make sure you are fully dry. If you can afford to, buy a bidet that connects to your toilet and get rid of toilet paper. Toilet paper has bleach and other harmful chemicals that can cause skin irritation.

5. Do sitz baths. There are many recommendations to put in your water: Borax, Epsom salt, baking soda, apple cider vinegar. Try them and see what works best for you. Use only 1 at a time.

6. Take care of your anus! LS isn’t just about one area. Many who suffer from LS have increased instances of hemorrhoids and thinned skin around our anus. So try to keep it clean by rinsing after bowel movements, eating plenty of fiber and making sure to put a good barrier ointment on it to protect the delicate skin.

7. Use a good moisturizer/ barrier ointment. There are a ton that have been recommended; coconut oil, emu oil, mineral oil, Lanolin, castor oil, olive oil, shea butter, Cocoa Butter, L-Lysine ointment, Calmoseptine ointment, Emuaid ointment, CBD oil ointment, baby oil, Almond oil....this is just a couple I could think of. These not only provide moisture but help protect the sensitive skin from harsh urine and feces that cause irritation.

8.  Look at all the products you put on or into your body. Try eliminating all chemicals and processed foods out of your everyday life and changing to natural products. This includes all cleaners, lotions, toothpaste, soaps, perfumes, deodorants, Toilet paper, nail polish, etc.) Make sure to read the labels before buying. Sometimes products are labeled “natural” and then you see a list of unnatural chemicals on the back.

9. Try eliminating stress and exercising more. Stress triggers LS flares because it produces cortisol. Cortisol is a hormone that lowers immune function and increases inflammation, which then increases the body's reaction to attack. Try meditation or walking for at least 30 minutes a day to help deal with stress. I also use CBD oil internally to deal with stress and anxiety. It is legal and can be ordered online or purchased at most health food stores.

10. Stay hydrated, your body needs fluids to carry toxins out of the body, regenerate cells, keep things lubricated and keep skin supple. Not having enough water in your system slows the healing process. Google how much water you should be getting every day, there are many calculators out there.

11. Supplements to take: Start taking a good multivitamin. Next time you see your Doctor ask him to check your vitamin levels, especially D3.

*Vitamin D3- 2000-4000 IU during the winter is safe, ask doctor for 25 (oh)D test. Good range is 32-50 ng/ml

*K2

*Calcium

*Should be taken together for absorption

Vitamin A

Omega 3

Omega 6- GLA (gamma linolenic acid)

Magnesium

fish oil

12. Start a good probiotic and prebiotic. You can kill 2 birds with one stone by eating fermented foods like sauerkraut, kimchi, Curtido, kefir, yogurt.  I make my own yogurt and curtido (Salvadorean sauerkraut). You can visit your library for cookbooks on the subject.

13. Get good sleep. If we don’t get enough shut-eye, our bodies cannot heal properly. During a flare, it is imperative to take it easy so your body can focus on getting your body well.

14. Wearing loose, breathable clothing and no underwear, especially during a flare!

15. During menstruation stop using synthetic pads and tampons. Use a menstrual cup or homemade cloth pads.

16.. Staying positive. There have been studies that have shown the effects our mind has on our bodies. Our minds have the ability to heal themselves, so make it a habit to mentally picture your body getting better. I do this every night before I fall asleep hoping my body will listen and heal those areas while I rest.

17. Ladies don't forget to gently pull back your clitoral hood and labia every day. Uncircumcised Gentlemen- Pull back your penis everyday as well. I believe certain areas tend to fuse because our skin is raw and is pushed together all day long, so when it heals, it heals back together. So, when you are putting moisturizer on or are in the shower take a few minutes to gently massage all these areas so you can keep them from fusing further.

18. Because steroids can leave one susceptible to getting yeast infections I have found taking odorless garlic supplements helpful. Other things that work is 1 tsp of coconut oil ingested or used topically, 1 tbsp of apple cider vinegar mixed with a cup of water 1 time a day. I do not take all of these at the same time but will take at least one of these at least 4 times a week. If I have a yeast infection I will ingest and use topically the coconut oil everyday for 7 to 10 days, do a baking soda sitz bath 2 times a day, drink pau d'arco tea every night. This has kicked my yeast infections every time.

 

Oh my gosh. I really feel for you. Sounds like Dr. doesn't know anything. Did you see a Gynocologist?

They know a bit more a GP. Has anyone prescribed a steroid cream? Initially it's great.

Then start using Borax, the type you use for laundry. I think it's 20 Mule Team .

Put 2 tsps. in 4 cups of warm water, shake well right away or it will clump. Put in spray bottle & spray it on every time you go to the washroom. Don't dry right away. Just wait maybe 5 minutes & just dab it a bit.

Then use a moisturizer  all over the area to keep it moist. I use Organic Coconut Oil, not processed.

I like MCT oil. Keep doing this, you will fell better. Don't expect miracles right away. But it really should improve greatly. Just don't give up. It's a horrible thing. More men should get it, then someone would do research on it. Right now I don't think anyone is, because it's a women's disease & men mostly do research.

Bless you, don't give up

I’m sorry. Your story is one we have all told. I found out 5 years ago after many trips to the hospitals and ER to be told I had every STD under the sun, with the same partner for 25 years. Actually had a fight thinking I got something from him because he was cheating.  Depression absolutely and pain leaves me in tears. Have had no sexual relations for 3 years. I wish I could say, it will get better, it won’t and like many auto immune issues if others can’t see it they have no sympathy or understanding.

YOu, YOU will be the desciding factor on how to deal with it. I block it, I don’t talk about it whine or discuss, no one will get it. But at night I cry and grieve I guess, I let it out and start the next day focused only on good things. Be strong there is so much more happiness and good things to focus on.

Try not wiping hard. Warm wash cloths. I shower twice a day. Sometimes more. Keep urine away from skin . virgin olive oil to keep moist. Use hydrocortisone when I have flare ups. So far it works. And I have faith in God.

Hi dorotha, the reason you are 'itching burning or hurting' is because you are flaring. 

The key to start feeling well again is in your hands, but it isn't easy. Here is my advice to you.  You will need to rebalance your body and to do this you will need to cut out all sugars for a month.  This means no sweet stuff at all, no cakes, no wine, nada.  Even avoid some carbohydrates (which turn to sugar) By doing this you will notice a change in your symptoms.  I know it is hard to grasp that sugar is the main culprit when you are flaring but it is an unfortunate fact of LS. 

It is not all bad news because once you start to feel better you can introduce a small amount of sweet stuff..but you won't want it again quite as much once you know the truth of what sugar really does to LS.

If in the unlikely event that you are not feeling better after a month then you will have to go Gluten free for a month to see if that makes a difference.  For some women that is like BINGO!! 

I would also advise cutting back on dairy.  Oat milk, rice milk, soy milk are all quite delicious.

In the meantime, I would invest in a Sitz bath to bathe twice a day and avoid wearing anything close to your skin at the moment.  After using the bathroom spray your Vjay with a bit of  water and a pinch of bicarb of soda to neutralise the urine.  In my opinion you sound like you are in a horrible state and so I do hope you try what I have suggested.

I should probably add that I didn't believe sugar to be the main problem, I found it hard to believe, Hanny, that posts on here kept mentioning it over and over, and only when I really listened and stopped over-indulging did I start to feel better...that was a few years ago.  

 

We can be support for each other. We all know what you are going thru. Hang in there. Go back to a caring dr. Come here when you need us!

I complained of soreness, cracks with bleeding, intense itching, etc. etc. for several years before I was finally diagnosed when I changed to a new GYN doctor.  She just looked at me for 15 seconds and said "You have Lichens Sclerosis".  I was prescribed Clobetasol for flares, but not much else.  I experimented with things mentioned on this forum, and have settled on organic coconut oil.  I buy the capsules, and use 2 - twice each day. 

I agree that you must get the urine off your skin.  It is very irritating.  The more acid or concentrated your urine is, the more it irritates.  Drink lots of water.  It dilutes the urine.  Sugars also tend to make the urine more acidic. 

I cannot wash down "there" - even with the very gentle stuff.  I use baby wipes for sensitive skin.  I use them GENTLY.  Sometimes I will use 3 or 4 wipes to get everything clean.  If I don't get around my anus really clean, it will flare for sure.  LS takes constant consistent care.  It's a total bother.  It is annoying, and depressing, and interruptive, and disruptive.   It is absolutely one of the WORST conditions, and almost no one knows about it.  Thank God for forums like this one.  

I do wear a urinary disposable pad, because the coconut oil goes through my panties and makes an oily spot on my slacks or jeans.   I do NOT wear tight jeans.  I have the lowest dose Estrogen ring.  It seems to help the thinning of the tissues. 

Right now, I'm only using the Clobetasol once a week.  I'm retired now, so I have less stress in my life than most.  I was recently diagnosed with Alopecia Areata.  I have 5 distinct bald patches on the back of my head.  I know this is also an autoimmune syndrome.   I did some research about metal implants.  I have a VNS stimulator for simple partial seizures.  The leads are made of a Nickle/Cobalt alloy.  It's been turned off now for 2 years, because I found a new medication that is working well.  Anyway, I read several articles about a link between autoimmune symptoms and metal implants.  The doc who put the VNS in, is going to remove it for me, and we'll see if it helps anything. 

Not everyone can use clobetestol, I cant thats ehy I get the shots. Please see a good dermatologist. Gyn are not as aggressive at treating this. Its a skin disease. It requires a lifestyle adjustment but you can succeed and be symptom free. I use an ointment also from Amazon called Vmagic. It's all natural and is wonderful for dryness. I also keep lidocaine ointment with me when I have torn skin. I apply it before urinating as that pain is bad too. I am fused because I couldn't tolerate clobetestol. See a dermatologist asap.

Hi Dorothea - it sounds as though you have a doctor who has little knowledge - so many of us on here have had that experience. And they are rarely empathetic which is cruel as LS affects your emotions so deeply. I am in UK and my GP just dismissed that side of it saying they don't have time/resources to prop you up. Their only solution is steroid creams. This forum is so helpful for support. Symptoms can improve with all the suggested regimes on here - top of my list after steroid would be keep it moisturised all the time - find what suits you: coconut oil, emuaid, olive oil, castor + lavender oil etc etc. wash with epaderm or similar. Use borax solution - I use it as a swab wash to refresh and soothe. Good luck - you will find relief and a regime that works for you in time and then will get used to managing it.

You'll get a lot of different advice because everyone is different and different things work for them. You'll find what works for you.

The OB/GYN I went to gave me good advice. No baking soda or borax (too drying). She initially gave me a powerful antihistamine to help with the itching (Atarax). I'm using Clobetasol ointment with a bit of menthol in it (more cooling). The cream irritated me. I started with twice a day but I'm down to twice a week now. I use an estrogen cream twice a week as well. I use Vaseline to cover the area as a barrier. Loose clothes, no soap, and a squeeze bottle to rinse off after using the toilet. I've eliminated dairy and cut down on sugar and carbs. I find that pineapple causes a flare up, so I eliminated that.

I went from having broken skin that wouldn't heal with incredible pain, burning, and itching, to feeling normal in just over 2 months. Good luck with figuring out what works for you. Look into applying for disability benefits, at least temporarily.