Lichen Sclerosus cured - but it took work.

hey dee

welcome! good to have you on board. sorry you have LS but you've joined the healing exploration!

how are you feeling generally?

I no longer have it - I rub manuka honey every night before bed into the area that I had LS - a pearl size amount - besides keeping LS away, it also keeps the tissues healthy

Hi dee!

I'm from San Diego Ca.

id like to know where did you buy the manuka honey

and like to know if you find any good doctor who helped you too?

thank you lula...his is a stunning post! hope to spea further xxxx

Great post Lula.

 

Dear Lula

I am so sorry that you were molested. That is an absolute disgrace and how dare they. How dare the staff fail to recognise your distress furthermore and fail to act on it. How dare they.

I can absolutely believe this sort of thing happens. 

Some wierd things happened to me too ...Its not a terrifically healing system...but you have found a way which is brilliant. Am very interested to hear more about your thyroid....I'm struggling with that too.

So your LS is sorted? That's great news.

'Fixed up' comes on about once or twice a year. She'll get back to you eventually!! x

Thank you for your really informative post and welcome to our group.

Hi Marey, thank you.

In a situation like that, the first people to call are the police. I told a GP and made complaints to some govt departments by phone. These things should be in writing. It was actually hard for me to tell people and even my mother didn't believe me or just didn't want to hear it which was the normal reaction. The same man performed an experimental operation on my grandmother when she was dying of bowel cancer and I couldn't do anything to stop it. I know that sounds dramatic and hard to believe. 10 years later I find it easier to talk about. I just think this man saw human beings as pieces of flesh and nothing more. He is so high in his profession people don't see how he could do wrong. I actually went to a few more gastros before I found a good one who did the right procedures in a hospital.

What happened to me was an on the spot sigmoidoscopy during an appointment at a gastroenterologist. The specialist took me into a side room and got me to strip off for the sigmoidoscopy during which he decided to "check for warts" while heavy breathing. At this point my only health issue was gut problems. It must have been about a month later that I developed inflammation caused by unknown infections in all of my mucous membranes and the lichen sclerosis. I couldnt get checked for infections because no one believed me. At the time it happened I was in a brain fogged state. I didn't react, paid for the appointment and left but was upset afterwards. I think it was the sigmoidoscopy and dirty gear used that massively affected my health along with the stress it caused me afterwards. I felt betrayed that even my boyfriend overseas wouldn't listen and we split up over it. I didnt trust doctors for a long while after that and did a health science degree while struggling with the infections.

I would say the LS is well managed but not sorted. Dairy and sugar can make it worse. I think the thyroid problems are related also. Do you know what thyroid condition you have? I am always in the low range of normal. Iodine improved it a bit (2 drops lugols every day over 3 months), but I know selenium and various nutrients are needed also. Even when my thyroid was only slightly low I was extremely tired and couldn't get out of bed. I was never overweight but usually puffy in the mornings and I still get pain in my legs which is apparently related.

Thanks for the welcoming messages

X Lula

I am so glad you called the police and made a real stink....or if you didn't then ...you would now and recommend it!

Actually I trained as a nurse and have had to make many assertions to protect patients in my time. Yes it is worse when people have no checks and balances. I saw people being experimented upon.

For anyone else reading this ..I know I don't need to make the point to you. Do not accept impromptu investigations...even by female doctors or nurses. We can be guilty of over enthusiasm and want to get in there to 'see what's going on' ...PR (per rectal) investigs are typical....so for example one wants to help the patient relieve constipation. I had a female GP just stick her finger up my rectum...haemorrhoids resulted. I knew I was constipated. I did not want an investigation for her benefit but rather a discussion.

Are you saying you think the sig gear may have carried unhealthy bacteria from a prior patient? As if you had a reverse faecal transplant? So that would be whereby instead of re-introducing good healthy bacteria you had pathogens installed which overcame and defeated your previously good biome?

I don't know if you're still struggling with this but I'd like to bring in another member, Suzanne, who has considered a faecal transplant....I was wondering about the prospect of a probiotic enema instead ....and wondered what you both might think of this? Prob something you coud do at home using an enema kit but I highly recommend a 'whistle tip catheter' as a means of intro since those phosphorous enemas have such a short and wide tip ...insertion is not comfortable.

Lets talk more about thyroid stuff over time....its a vital adjustment process. Am very interested in your perspective. My TSH is currently 5.1 I got it down using thyroxin...am wanting to experiment with supplementation to try to achieve the same reduction... but for now I think I'm going to take it more regularly (low dose). Anyway lets talk more. Again welcome !!  

Hi Marey

That's great advice to everyone re the impromptu physical investigations.

I already had bad flora in my gut and the biopsy with dirty sig tube would have let extra infection in my blood stream. I have probably always had the CVID. I did do some probiotic enemas, tried pretty much everything but they didn't help. These days I have infections in the upper sinuses which are dripping into my guts all the time so that might explain why.

Do you have Hashimotos Marey? My TSH never went up in response to the low T3/T4 and that's why a doc guessed it was nutritional. At the time I developed the lichen sclerosis my periods reduced to 3 weeks. I know to avoid brocolli, soy and pine nuts also because I was eating a lot of broccoli at the time my thyroid got to its lowest. I recently met someone with similar symptoms to me who discovered an inverted goiter on a scan. She was quite sick even before her hormones got into the diagnostic low range and improved dramatically on thyroxine. Maybe with adequate iodine the whole thing could have been avoided but she did say that thyroid conditions run in her family.

Quantitative Immunoglobulins

A test for quantitative immunoglobulins (Igs) is used to detect an excess or deficiency in the three major classes of immunoglobulins (IgG, IgA, and IgM). It gives important information about the health of an individual's immune system and is used to help diagnose various conditions and diseases that affect the levels of one or more of these Ig classes.

I have requested that my doctor order the Quantitative Immunoglobulins test. Thank you for the tip Lula!

I am so thrilled you are doing so great! So did you not have LS after all and did you have something else? I just noticed that you said that your biopsy was negative?  Wishing you continued good health with no LS symptoms!  

Sorry I didn't see your question before this.  Yes, the biopsy turned out to be positive for LS...but the good news is that it was negative for cancer.  I have had this disease since the 1970's, and it had gotten so bad, my doctor was expecting the 'c' word.  I am so relieved.  Better yet, it has now been almost a year of using this simple spray, and I am happy to report I am still about 80 to 90 % improved and have never had to use the clobatasol again!  If you or anyone else decides to try this, I sure would like to hear if it works for you.  Best of luck to you and everyone who is trying to find a solution to this terrible disease.  I know the full cure is there, we just have to find it.

Hi Ozzie!

I'd like to try your spray, I'm 38 years old and I feel desesparate, hve two kids and some times I feel hopeless, I'd like to get better soon for them.

how can I make the spray, can you be more specific

Thanks in advance

Hi Raquel,

I have to tell you, I have had great sucess with this.  I sure hope it works for you too.  In the year I have been using this spray, my doctor has made it up for me.  She did give me the formula she uses...here it is:

 Hydrogen Peroixide and Saline Solution:

      4 oz bottle of hydrogen peroxide mixed with:

      500 ml of saline.

Put it in a small spray bottle and use after each bathroom use...up to 4 times a day, (I'm now down to using it once daily after I shower and it is keeping the LS at 85%-90% improved).  Most days I forget I have LS...isn't that amazing???!! It just seems t get better and better as time is going on.  I fully expect to be 100% healed in the not to distant future.  I was told there was no hope for a cure from this.  I wish doctors would not say such things.  I think there is always an answer...it just has to be found.

Best of luck to you.  Please write and tell me how you are doing.  Remember, it may take some time to start healing....but don't give up....it's so worth it!

Thank you so much for sharing ozzie!

i'll do it for sure, and I let you know how's it going.

can you help me with another question?

im new in this, so the only doctor who saw me was a dermatologist,

do you think I need to see another specialist?

she just prescribed me clobetasol. What you think

Well, I was prescribed Clobetasol for the last 30 some years.  It started out that I used it every three/four days or so.  In the end, when the LS got so bad, I was using it every day....even though I feel it stopped working. I used the medication because I needed to do something to help myself and was told there was no other treatments available.  To tell you the truth, I feel the biopsy I had was a blessing in disguise.  I would not have tried this peroxide/saline solution if it wasn't for that.  I am so glad I am free of that Clobetasol.  For me, it was messy and not doing a good job with the pain, tearing, scarring and itching. I don 't know if Clobetasol will work for you or if this peroxide/saline solution will. All I can tell you is that the spray has worked beautifully for me...and for the first time since I was in my 30's, (I'm now in my mid-60's), I feel free from the daily burden, torment and worry of LS.  For that, I will be forever grateful! 

Best wishes,

Nancy

One more thing...my own GYN who performed my biopsy and gave me the peroxide/saline spray to heal the incision, had no idea it was going to heal the LS too. Additionally, I told my auto immune doctor about this spray too, and both my doctors said I should tell other people to see if they can find relief as well.  In short, I don't think any kind of doctor knows about this spray helping LS ...the answer may seem too simple.  But, I am so happy that I've been blessed with this much needed relief!  I hope you find a doctor who will help you experiment with this solution so you will have this blessing too.

Don't you find that the peroxide solution has a bleaching effect?  I'm having good luck for my LS with witch hazel spray and 100% aloe vera gel. All my scarring has gone. I've also recently been using the manuka honey at night and that has helped.I only have one stubborn spot left, but that is much better.  I'm day 9 on the Paleo auto-immune diet. Am finding it not as difficult as I was imagining. I had LS first...and almost 10 years later developed an oral auto-immune disease, which I've found is not unusual.  I started the diet as I've now been told that what they though was oral lichen planus may be benign membrame mucosa pemphigoid. As this can also go to your eyes and in 50-85% of cases (based on different studies) cause blindness  I decided to get proacitve with the diet. 2 biopsies and no firm diagnosis yet. Have to strenghten my gums before I have another.  So don't give up on including diet restrictions...you definitely want to avoid getting a second or third auto-immune disease. 

Are you mixing the aloe and the witch hazel in a spray bottle?

No.  I spray on the witch hazel and then just use a small amount of aloe vera gel that I spread around and lightly rub in. It also helps alleviate the itch if you have that.

Thanks Renee.  I am so glad what you are doing is working well for you.  To answer your question about a bleaching effect, for me, the answer is no.  In fact, I have never looked healthier.  It was the LS itself that was turning my private parts white with scarring.  I am about as normal as I have looked in over 30 years.

I am interested in what you said about the auto-immune problems. Besides the LS being auto-immune, I have been diagnosed with Fibro and Sjogren's Syndrome.  I have a feeling these are all connected.  Recently, I have gone on the Paleo diet too.  So, we'll see what happens there.  Also, I would have tried the honey except that I don't have any reason to use it.  The spray has cleared up about 85-90% of the LS, and I believe it will clear up the rest with time.  In the mean time, no pain, itching, burning, tearing or scarring...YAY!!!!!

I had fibromyalgia for 17 years and cured myself with diet.  They say once you have one auto-immune disease another is just waiting in the wings. With the fibromyalgia I found the following. Do not eat or drink anything out of aluminum...and do not cook in it. Avoid all hydrogenated and partially hydrogenated fats and oils. (Organic coconut oil and palm oils are okay) Avoid all artificial sweeteners.  Take 2 fish oil capsules (the big ones) 3 times a day and work up to 3 magnesium malate tablets 3 x a day.  Be careful with the magnesium malate...combined with apples, apple juice or apple cider you will be running to the loo as it will be a major clean out.  After 3 months you will feel 75% better...you will almost suredly have zero symptoms after 1 year.

Oh, and it would be beneficial to avoid all foods from the nightshade family...your symptoms will likely clear quicker if you can give these up.  If you are on the Paleo diet...you probably already have done this...but just wanted to reinforce that.

Thanks Renee :-)

Wow!  This gives me a lot of hope.  Thanks

Hi!! please let me know what brand of hydrogen peroxide, is it at 3%

Thanks!

Dear Ozzie, thank you for sharing your experience...i am gonna try...hope my dermatologist is up to understand my request about the mix...i just found out about my LS, i am 45...i think i just got it recently since i did not had really sinthoms....now i am using clobetasol every day and i put my cream every morning after the shower...but in the evening i am already so red and uncomfortable....i am so depressed since i know about this....is normal to experiece just pain? i dont feel itchy, just pain, even sometimes internal..so frustrating..

My Doctor mixes it up for me, so I don't know.  I have an appointment with her in August and will ask for you.  Right now, if I am out of her mixture, I use the full strength with the other part being the saline solution.  Sorry I couldn't have been more help.  I am still doing great, so I hope that gives you some hope.

I felt pain for some thirty + years.  Itching was on and off, but by the end, I had pain and itching all the time.  I also tore quite easily in that area, (I even had to be careful when wiping myself after using the bathroom or I would bleed. Intercourse was out of the qustion, and pelvic exams had to be done with out the speculum, ot else I would tear apart.  During an operation I had had to be cathed with a child's catheter because it was too painful to insert and keep in an adult one.  Eventually, the area turned white because of scar tissue.  To feel as well and pain free as I am now after 30+ years of this horrible disease is an absolute miracle!  I truly felt like I would die of this and/or be in pain for the rest of my life.  I am humbled and greatful for this enormous relief!  I hope you find it too.

Hi Silvia. Hang in there. Clobetasol takes weeks and months to work. In fact, you may want to be using twice a day initially: morning and evening.

There is a great doctor specializing in LS treatment here in San Diego- Dr. John Willems. He's at Scripps Carmel Valley. Get in to see him, you will not regret it! He also specializes in vulvodynia (pain). He has been treating this disease for 30+ years. I found out I had LS 7 months ago and mine is now well under control. I forget I even have it most days. I think freaking out when you are first diagnosed is normal, but it can be controlled.

Here are some things I did that I think have helped me:

1. used clobetasol and estrace religiously. For 4-8 weeks a pea size amount of clobetasol twice a day, and a pea size amount of estrace twice a day. Then 8 weeks of once daily application. Then taper clobetasol but continue estrace twice daily. Your dr. will be able to tell you what specific areas at this point.

2. I got tested for food allergies by an allergist (covered by insurance). I turned out to have 3 food allergies. I now avoid these foods and I feel 100% better energy, mood & itching-wise.

3. I try to eat a lot of anti-histamine foods and I avoid eating too much of certain foods that are high in histamine (low-histamine chef is a good resource for foods that are good to eat lots of- a few are apples, blueberries, arugula, pea shoots).

4. Meditation & exercise. These are anti-inflammatory and stress managing. My dr. has said stress is the #1 thing we need to control when we have LS.

5. Seriously limit wearing of yoga pants (which I used to live in). Wear underwear as little as possible and air out all night and whenever I'm home.

Also, I hope you have found the yahoo and FB support groups. They have a lot of great information. There is a video by Dr. Goldstein you can google to watch. It's full of information on how to treat. He recommends soaking before applying the cream and rubbing in for 90 seconds. I did that in the beginning and it helped. Now I find I don't need to soak every time; showering works fine, and I only soak ocassionally.

I have tried your hydrogen peroxide/saline solution...but in the mouth where I also have lichen...or a related disease.  Jury is still out on the actual diagnosis.  I find that it is helping. Haven't had to use it elsewhere as I'm doing so well there at present.  But thankful that it is helping with the oral form. Thanks so much!

Its ok I understand if you could let us all ladies know on the future that would be amazing.. I am using the 3 % with the saline solution, it stings a bit so that worries me haha but since you got such good results I will continúe doing it

So glad you are pain free, god bless you

Just a small warning on the Estrace. There is a group of women who are allergic to Estrace and Premarin.  Yeast infections are one of the possible side effects.  I would suggest that one look into bio-identical hormone replacement. Safer...more natural...no parabens...or other unnecessary ingredients.

Thank you so much for all this good advise! i cant really use estrace since i have some lumps in my breasts, all good ones but they recommend not use estrace...thank you again, this is helping me so much..

Thank you so much!! i wonder if they would do this mix in the farmacy without my dermatologist orders, she provably will not beleive me...or look at me in a certain way...

Don't forget to water it down with the saline solution.  It shouldn't sting, (sp I would guess you are using too much for your situation).  As t heals, you can try add a bit more peroxide.  Be patient.  It too a while to get th results I have gotten.  Good luck!

Glad it is helping you.  But, be careful not to swallow any of the mixture.  I believe injesting too much peroxide can be dangerous.  I have used it in my mouth with good results too, but the dentist said to make ure I spit it all out.

 

Also i am not sure if this happens to everybody but my most affected area is my perianal area...i have also both sides of my clit with white patches, not so big but the worst is in my perianal area...

Those were very bad areas for me too.

I don't know...but it never hurts to ask.  Be brave and ask. I am really sick of these medical professionals who 'look at you in a certain way' when you are suffering and trying to help yourself when none of them can. You just want to make sure you don't do anything to damage yourself further.  Good luck again!

Yes, I am very careful not to swallow it. Can make you very sick as it bubbles like crazy in your stomach.  I use it once or twice per day. Thank you.

Thank you so much....my sister is a doctor, not a dermatologist but a good doctor, but she lives in spain, she said shouldnt be any problem , and you know that in your own skin! so i will give it a try and ask my doctor here..i see her on the 15th...

Great!  Let me know how you make out.

You're welcome

Got it thanks a lot!

You're welcome.  My apologies for all the typing errors :-)

Hello again! I am following your advice .. I also called the doctor in Washington, d. Goldstein and they dont take insurance, and its insane expensive! Does your doctor in San Diego taking insurance?

also premarin is extracted from horse urine and the horses suffer enormously

I too would be interested in knowing whether the hydrogen peroxide is 3%, 5%, etc.  I have a bottle of 35% which I can reduce down with water.  I am in agony with this itch, have it in genital area as well as on trunk and half way up breasts.  Very recently diagnosed and it appears to be spreading so quickly.  Also, am hypothyroid and started iodine protocol in April. Thanks.

I'm so sorry that you are struggling so much. My doctor mixes the solution for me and I'm not sure what percentage of hydrogen peroxide she uses. I see her in August and I will be sure to ask. In the meantime, I know that doesn't help your immediate situation. For me, the rule of thumb, is not to have the solution burn me.  I would rather it takes a little longer to heal than to make the area worse. You can always add more peroxide if it doesn't seem to be healing. I wouldn't dilute the peroxide with water, I would diluted it with the sailine solution.  It will take a few weeks to see a bug dfference, but please ang in there...t has been well worth the wait for me.I hope this mixture works as well for you as it did for me. Please let me know how you were doing. Best of luck...Nancy

Distilled vinegar is supposed to help with itch.  If you have some...try some dilluted a bit with sterile water and aloe vera mixed in.  Just mix up a tiny bit and apply it in a test area.  This may help.  I know that it helps with bites. When I had this on my legs I put a little vinegar straight on the area...it burned but helped with the itch which was driving me crazy. So I think dilluted and with the aloe it may sting less and be more effective. Worth a try. Know how miserable you are.

Have you tried oatmeal baths?  Finely ground oatmeal...or you can purchase it for bathing already ground.  Dermatologists recommend this for LS as well as other itchy skin issues.

Hello! I have a question for you, mi lichen is totally better, white patches are almost gone...but i still have many days redness in my labia majora..is that usual?

Thank you!!

Hi , I am a hairdresser ! Can I use the peroxide I colour hair with ?. If so what strength ? And what is ? And where do you get saline water from ? Thanks Jackie.

Ozzie plz answer asap. I was recently diagnosed with LS on clitorus. I had biopsy Saturday 12/12/15. My obgyn is willing to write me prescription for the 500 ml of saline, but she is questioning the % of peroxide. Is your protocol call for 4oz of 3% peroxide or 30% peroxide. Plz let me know so I can start this protocol asap and I'm getting the 500 ml saline on Monday 12/21/15. And if I need to get a prescription for a higher % of peroxide other than 3% I will need to contact my obgyn to authorize the pharmacy for the higher %. Thank you for your help! I'm hoping this works for me as well as it did for you. Thank You!

It definitely worked for me -- see my longer post up-thread.

Thank you so much for your input. I am so glad to hear that you have continued to improve. I am new to this site. I was searching for answers and stumbled upon this forum. I am a happily married post-menopausal woman. Sex after menopause was not so good as I experienced extreme vg dryness so of course I reorted to lubricants which helped for several years. I cannot take oral or vg hormone therapy. Last year sex was becoming so painful I would literally clinching the sheets and in silent tears as I did not want to dissapoint my sweet hubby or let him know the very real pain I was enduring. I felt my vg opening was shrinking and the skin at the bottom of my vg opening was tearing every time we had intercourse. I have no medical insurance so I went to our local health clinic for a pap smear. I confided to the medical practitioner and after looking closely at me she informed me that I might have LS. She could not do any tests to confirm that diagnosis nor was she even supposed to suggest or tell me such a thing because she is not an OBGYN, not a even a doctor I suppose she was just a licensed practitioner. Anyway she told me the white skin between the vg opening and anus had the appearance of LS and that there was no sure for it. She told me to go home and look it up on the internet which I certainly did. I came home in panic mode. My pap smear came back fine but I have not been able to have vg intercourse with my hubby but once since then. I don't have a positive LS diagnosis but I truly think that is what I am dealing with. I have been to my regular family Dr. and she simply gave me some hormone cream and a topical steroid. I have battled sever yeast infesctions on and off since I was young from having to take so many strong antibiotics. I am going to try the saline/proxide spray for sure!!! Will let you know if it helps...

As an added note I also have IBS and have dealt with it for years. I started taking probiotics every day a couple years back and that has been a tremendous help with the IBS. I welcome any help... I feel so hopeless and desperate. 

Much love to all of you who have been bold and brave enough to share your experiences with this disease. My hope and prayer is for a cure for all of us!!! 

I just got my diagnosis Monday after suffering in silence for over 13 years.  Found this thread Mmnday night, had the peroxide & spray bottle. Went out Tuesday morning & got the saline spray & mixed up my first batch & started spraying. By Thursday morning I was feeling SO much better that I refused to pick up the prescription of corticosteroid! Because this was such a terrible outbreak, I finally went to the doctor, and am using my husband's gabapentin to control the terrible pain, but am pain-free & itch & burn free now! Thank you for sharing the recipe with us all! I will be giving it to my physician when I see her on my return, & explaining why I refused the cream!!

did you ever get the exact formula?  I was diagnosed with LS 2 years ago (by 2 biopsies in different areas of my vaginal area).  I have tried the creams with not much releif.  I saw a dermatologist who prescribed some compound meds - $80 for one month!  I can't afford that but it did seem to help.  My clitoris has vanished, I'm not able to have sex without excrutiating pain and now this hideous disease is all around my anus and believe it or not more painful than in the vaginal area!  I believe the skin tears every time I need to go #2.  It's like trying to poo ravorblades.  I'm sorry for TMI but I feel like someone out there might have similar symptoms and a possible cure!  If you could provide the formula you've spoken of I would love to try it.  

Does anyone have any advice for how to have sex?

Thank you...I'm so glad to have this forum!

Diagnosed 9 years ago. Celibate. Use A&D ointment.

can you share the recipe...I am very interested in trying!  thank you!

Hi Kazerias,

I would suggest going to see a naturopath or a chinese medical doctor. It's the advice I took from the original poster of this forum (BLESS HER!) and have not regretted the time and money I put into it. Western medicine will treat the problem from the outside with creams, but the problem is much deeper and must be wholistically evaluated and treated. A year ago I was out of my mind dealing with the pain and the depression this disease was causing me despite how closely I followed my doctors orders, and the pain during sex was excruciating. Within days of seeing a Chinese medical doctor my symptoms had subsided greatly, and here I am a year later feeling so much better. Not 100% yet (that's my goal, I am still working on it), but at least the daily itch and irritation is nearly gone, and sex is enjoyable again.

So please please go see someone who will treat you wholistically. In the meantime, here are a few things you can do that I do that have helped a lot:

cut out gluten and dairy products and reduce sugar to almost none (even fruit and other natural sugars as much as you can). Cut out alcohol (especially wine and beer which are sugary). Alkilize your diet, eat kale and sweet potatoes and organic grassfed beef. Take a teaspoon of flax seed oil in the morning and evening (for itch), take a tablespoon of coconut oil a day (for skin health). Add raspberry leaf tea and organic bone broth to your regular dietary regimen. If you can, do a three-day bone broth fast to clean your liver and intestines out (check the internet for dosages).

My big take-away from my experience with this horrid disease is that the problem is internal, so no amount of cream applied to the surface of the problem will give yo the relief you need.

Good luck!!

Thank you for your detailed response! I will try to find natural path or Chinese doctor.

I only have the horrid itch once in awhile...my biggest issue is going #2 with what feels like tearing, and not being able to have sex.

This stuff is awful.

Debra

It's the worst, I concur! But don't give up... you'll find the solution that works for you and your body based on the source of the problem. I get the sense that it's a little different for everyone, hence the importance of seeing someone who can evaluate your particular body and the remedy that will work best for you.

Best,

Adèle

I was diagnosed with LS in my late 20s, but not to much of a problem that Clobetasol on occasion couldn't help. Since reaching menopause it has been more painful with sex. I totally related to your description. I recently saw a practitioner that gave me some tips, but I am definitely going to try the spray listed in this forum as well. She recommended using, believe it or not, Crisco. During intercourse we would use lubricants but I started wondering if that wasn't causing irritation so I switched to Coconut oil solid. She said that melts down at a lower temp. so Crisco type shortening works well. Insert into the vg once to twice daily and surrounding areas, including rectal area. This helps with bm clean up and less rough of the skin. I also have been using on my husband prior to intercourse. I am finding a bit of relief from the dryness.

The other tips are be sure to use hypoallergenic detergent especially for your underwear. Go bottomless at night. Be sure you inform your husband of your intent so there are no misconceptions. Haha  Use hypoallergenic soap on hands and body, your husband also. Cooler temp showers, and use white unscented toilet paper.

Destress, Hydrate with water, and watch diet.

This is definitely a topic that is difficult to discuss with others, I'm glad we have this forum.

From all I have been reading about steroid creams/oinments, I wonder if you were getting worse over time because of the steroid.  It's not made to be used daily for that long.  It's powerful.  It's just like taking it orally, you have to taper off it or you get rebound.  Rebound is horrible.     I believe the daily steroid use is supposed to be limited to 2 weeks then taper for 2 weeks then once or twice a week for maintenance.  I know my doctor had me using it way too long and I ended up with steroid damage which was the same as the LS.  It was on my perineum and fourchette.  The fourchette would tear easily and stay torn. I took a pelvic pain specialist to uncover why.  She said there was definite steroid damage (thinning) and gave me estrogen cream to "thicken" it up and heal it.   I was using daily steroid for 6 mos then 4 mos of taper but the damage was done.

I don't know if I can post this link so if it doesn't work- do a search on Topical Steroid Withdrawal    https://www.dermnetnz.org/topics/topical-corticosteroid-withdrawal/

I realize that it's been 3 yrs since this was posted so I'm basically posting this so others can see it who are still coming to this post.

Steroid withdrawal has the same symptoms as LS (other than the skin turning white---at least that I know of).   Something for all of us to think about.  I read somewhere that if you have LS and you use steroid cream/ointment but it stops working or makes it worse over time, consider steroid withdrawal.