An Experiment with Borax

Since I'm in the US, I thought I'd answer the question. I saw some in the grocery store in the laundry detergent department, and checked the label.  It said it was sodium tetraborate, so I came home and did a search to see if that is the same as sodium borate, and it is.

Anna

Well, I didn't see your answer until I'd already ordered some from amazon darn it! But will know when that runs out. Thank you.

Question: when you say baking soda baths, do you mean a typical bathtub type bath? Maybe a shallow one?

I ordered mine on-line too, until I realized I could just buy it at the grocery store. :-)

I fill a tub to it's normal level so that it completely covers my pelvic area, and sprinkle in about a 1/2 cup or so of baking soda as it's filling.  You could  probably do a shallow one, or even use a sitz bath, as some have stated here before.  It would be nice to hear from others about how much they use and how frequently.  

 

I bath in about 1/3 cup baking soda, about every other day. I am starting to see a ridge where my inner labia had adhered to my outer labia. Looks like it's slowly releasing! Exciting! And my skin down there is looking healthier too. However, I sometimes feel I actually get itchy from it. I need to use lots of moisturizer on the areas where there's pubic hair after I've bathed in it. it's worth it though if I have a release of fusing.

Yes, I've noticed that little itch afterwards, too.  Thanks for sharing!

It's fusing in reverse! (ha)

I've had the same with the borax. At first it freaked me out, but then I realized what was happening. Such a tremendous relief!

Yes, what a blessing!

Sure enough, saw a big box of it at grocery store today. Spent $20 on a small bag via amazon, could have had BIG box of it for under $4! Ha ha

I bought the big box AND a big box of baking soda. I'm set for awhile!

I started with 1/2 cup of baking soda in a shallow bath about 4 inches (I looked up sitz bath in the bathtub and it said 4 inches, just enough to cover that area. The next day, I was feeling a bit hot down here, not burning, but hot. So, I reduced it to 1/3 cup as suggested by Hanna and it worked. I suppose you can use 1/2 cup in a full bath it would be ok. Hope that helps.

I meant Hanny.

Hi Micheline,

I originally started with 1/2 cup in a full tub, but then saw that others were having success with 1/3 cup, so I cut it back. It's probably a good idea to start out slowly, to see if you can tolerate it.  Good luck!

Hi Anna,

So nice and comforting to hear from you. I've been at a standstill. I got scared because the bottom part of my inner labia had some nearly black coloring on them. I was applying hydrocortisone 1%. I think it was a reaction between the cortisone, oils, and baking soda, but that's only my opinion. So, I stopped everything and went to see my GP. She decided to put me on the clobetasol 0.05% once at night for 6 weeks. In between, I am applying the wonderful coconut oil. I've never been on this steroid, but I just want to see what happens. I've used it twice already and I've noticed this morning the black has faded away quite a bit. So, it looks like it was between the cortisone and baking soda. Whew! I don't want to be on the steroid forever, so I want to keep tabs on this website and try the borax one of these days. I always only half fused and I'm still there, but I think that's because I had a large inner labia. It's funny, I measure 4'11 with a large labia, (lol). Life is stranger than fiction.

Right now though, I want to investigate the dilation part of it, because I'm deathly afraid of narrowing or closing. I have a bit already. I got a dilator from Amazon, but not sure if it's the proper one. It says Intimate Basics Dilator Set. Should I look more into medical dilators, if they do exist? I need information from anyone who is using dilators.

Thank you so much for replying to me Anna.

I was just wondering if we could use a Dildo instead of having to purchase a dialator?

I think you can use whatever you want. You just want whatever you are using to be slightly larger than what you've got so you can gently enlarge the area.

Hi Micheline,

I'm not sure where to buy dilators.  I looked at the ones on Amazon, but they seemed rather narrow.  I have a vibrator (blush) that looks larger than the ones I saw on line, so I've been using it.

Regarding steroids, I've never seen any information stating that they help with unfusing.  They help with symptoms: burning, itching and inflammation, and so they make you feel better, but don't expect your fused parts to change from them.  If I remember correctly, I thought you said you were not experiencing any burning or itching. If that is the case, you are better off trying the baking soda baths (go lightly at first) and/or the Borax treatment (swabbing on a saturated solution).  I don't use any steroids and have found healing with the natural remedies.  It took many, many months for me to even begin unfusing, so don't be discouraged if you don't notice any changes right away.  It's a marathon, not a sprint as they say.

Hi Brenda,

Well, that's a good question, and one that I would like to know. Does it really have to have medical grade plastic. There's something else too that I'm wondering about. What about the leeching in the plastic over time. What's in the medical ones that makes it so expensive? I bought a cheap one at Amazon but you can't read all the information that's on the box on Amazon, and when I got it, it said should not be used on diseased skin and should not be used for medical purposes.

I think if you're going to use a dildo or vibrator, is to make sure you use a water-based lubricant with no glycerine and parabens. Apparently, an oil-base lubricant can harbor more bacteria. And according to something else I read quoting:

"The best personal lubricant for maintaining normal vaginal acidity has a pH close to 4.5 (the vagina has a pH of 3.8-4.5). The World health Organisation states women should avoid personal lubricants with high acidity (high pH). High acidity increases the risk of bacterial infection resulting from an imbalance in the normal vaginal bacteria."

The trouble is though that the ph is not often added on the labels. I'm afraid of infections and having to get antibiotics. I already had a bout of urinary infection caused by this horrible disease.

Hi Anna,

Yes I know. I'm afraid not only of the fusing, but also of the narrowing and shrinkage and having trouble eliminating. I went to my GP and told her I didn't want to wait 8 months for the Vulva Clinic appointment. She examined me when I told her about the dark lower portions of the inner labia. And so she then prescribed the Clob steroid. She knew I had no itch, pain, or burning. You feel so helpless.  

Hi Anna,

Thanks for your message. I wanted to add something else. Isn't the steroid necessary when the greyish/whitish color comes back? Right now, the area all around the clitoris is white, or grey white.

With regards to finding a good lubricant, aside from coconut oil, which works great (it is an oil afterall), if you have a good sex shop in your city, go there and ask. That's what I did prior to leaving Canada. I explained my requirements and she gave me some great suggestions. I just don't have them on-hand to share the names.

In terms of dialators, yes, medical grade plastic would be ideal. But seriously, maybe not for the squeamish, if you need something, use a vegetable!

As for the white/grey plaque, the borax solution cleared that up for me, and for many. So once you're ready to give it a go, hopefully you'll have the same success!

Great of you to reply. Yes I still use coconut oil for the outside. I like it. I'm trying to get the Emu oil because it has vitamin E in it which I think would be good, but hard to find. Walmart near me has it but it's out of stock. I wonder why? Also, Shoppers doesn't have it. It's online but expensive. I might get vitamin E cream and just mix a bit with the coconut oil. Does that sound ok?

I'm going to try and reduce the Clob because I don't see what good it's doing me. I'm scared to let it go completely as many of you were, but I'm going to reduce it for now. I'm at a cross-road is where I am.

Also, I'm suspecting garlic would be good to try. I've unfused a bit after eating a sauce made with lots of garlic in it at an Eatery. I know it sounds ridiculous, but I now have a very watchful eye and did keep note of that. It may be just a fluke though but I'll see.

I might just go ahead and use the dilator I have for now, but make sure I use the proper lubricant, until I speak to my GP. It's only to insert it and leave in for 5-10 minutes and then withdraw. Oh Alistar, you're so funny! That reminds me about a joke I heard 100 years ago about the nuns doing push-ups in the cucumber patch haha. Good to add a bit of humor here. I'm a bit of a joker anyway.

The borax solution yes. I am thinking more and more along that vein. Still scared though. Talking to a friend last night at that Eatery and she was not surprised by it being used for this. So, it's encouraging.

I don't know what the medical profession has to offer us, especially the ones who don't have pain, itch, and/or burning but so frightened like I am seeing our parts literally disappearing. I wonder what the physicians, especially the males, would do if they went to the bathroom for a wee and saw their parts half the size??? I'll bet there would be a lot of research going on right now.

Going into another phase, encouraged not only by my friend, but by all you wonderful people here.

Hope things get better for everyone. 

Hi MIcheline,

To reiterate what Alistar said, the white areas went away with my usage of the borax treatment.  The point of steroids is to reduce the burning, itching, ect. (which you don't have) so that your body can heal on it's own.  But steroids have side effects, whereas most everyone on here who has tried the baking soda and borax have not had any side effects.  Borax is just a naturally occuring mineral (sodium borate) and is included in many products we already use, including cosmetics.

One last thought about oils, I noticed you asked Alistar what she thought about you mixing Vitamin E cream with your coconut oil. Until you get things under control, I would not recommend that.  Just stick with pure oils.  If you don't want to buy emu, you can use almond oil or jojoba oil.  The vitamin e cream you are considering could possibly have other ingredients, including fragrances, that could be irritating.

 

Hi Anna,

Thank you for responding. Yes, I know. I don't know why they prescribe that when they know there's no itching, pain, or burning. Ok, but has the Borax done anything to stop the shrinking and fusing? I think I've seen posts where they say after a long time the labia started to unfuse, but what about the shrinking and the narrowing?

I used the dilator today for 5 minutes. There's 5 sizes to it and I was able to fit the biggest size. But frankly, the other sizes were really small. I am now looking for the protocol you call it? The number of times a day I'm supposed to use it. And I guess I'm going to have to look for another one. I'm still leery that even using the dilator, I'm going to keep shrinking. Does the borax help with that?

 

Micheline, LS is LS.  It's a constant fight.  But very doable when under controle with a certain routine.  Dilation I will have to do for the rest of my life, at present twice a week.  I have tried to do it at longer interfalls, but then all narrows again. 

?If you can already use the biggest dilator you are one lucky woman.  I started with the size of a crayon and gradually worked my way to the biggest size. 

Hi Micheline,

Unfortunately, I haven't seen any evidence that the borax or baking soda treatments help with vaginal narrowing.  Like Hanny said, we just need to improve it ourselves by stretching the area. Everyone is different.  I only do it once a week, but I should also mention that I use an estrogen cream, which helps with that.  Some people can take estrogen, but others may have a medical background that prohibits estrogen therapy.

Since you are just starting out with the dilator, it would probably be a good idea to do the stretching every other day or even longer, so you don't cause any new irritation.  If you keep at the stretching, you will stop the narrowing, so you've got that handled!

Hi Hanny,

So nice to hear from you. Yes I know it's all consuming, but could be worse and yes it seems to be doable.

For the dilation part, that's where I am right now is to find the best routine for me which is a big question mark. Have no clue as to how often a week and how long to leave it in each time.

I'm confused. You say that you've tried to do it at longer intervals, but then that made it narrow again? Longer intervals meaning longer than 5 mins each time, or more often a week? How could that make it narrow again I wonder?

Yes, I can use the biggest one, but like I said before and one poster said, the ones online are rather small, all of them. The biggest one in my set is 11 cm (or 4.5" in diameters, around. Have nothing to compare that with. Too bad the medical profession, well my GP anyway, doesn't offer any help in that regard to set a routine. She doesn't seem to want to deal with it.

Yes, I know. That is so incredible what you've succeeded in doing. My hat's off to you and my heart goes out to you. You deserve a medal. And thank you for sharing.

Thank god for this website and you.

Hi Anna,

Thanks Anna. Yes, unfortunately, I didn't think so anyway. Another thing I'm learning. I didn't know estrogen was good for that. Well, my GP is deathly afraid of estrogen. Not sure if it's only for me or is just generally afraid. Before this LS came on, I told her I was very dry, so she prescribed estrogen Vagifemme tablet to insert internally, and immediately sent me tor a mammogram. That scared me. I have cystic breasts. I also had an infection in my right breast 40 years ago, and they always call me back for a second mamaogram for that breast. So, maybe it's just as well I don't take estrogen.

Oh yes, I'll keep stretching for sure. Thank you so much for your encouraging words.

Hi Micheline,

With longer intervals I meant - more days in between.  I'm at twice weekly at the moment.  If I leave it longer, meaning leave more days in between I find that it narrowed too much again.  Thus - a constant battle.  (and I am on hormone replacement even) (someone mentioned that HRT would make the narrowing less)  (only flexible skin) 

?I'm not sure about the size you mentioned - 11 cm diameter?  So I measured mine - the biggest is 12 centimeters in diameter. 

?I can imagine how frustrated you feel -  no explanation or help from your GP.  Most of the time I ask questions and receive answers.  Though I start to understand that for the most part you have to figure it out yourself.  This site is a god sent.  Perhaps we are all too different and thus hard to give precise advise. 

Hi Hanny,

You explained it right, it's just me not understanding. Ok, yes that makes sense. I guess I'll have to play it by ear. Right now, I think I'll do it every alternate days and see what happens.

If the biggest is 12 cm diameters, then I need to get another set, this time a medical one like you got, if I can. I'll have a look see again on Amazon. I don't know where else they sell these. These should be made available easily to everyone who needs them.

Yes, I read that the hormone softens the skin around the opening, but it doesn't help with the narrowing? Yes, have to fish for myself I guess. I agree about this site being a godsend. It's true we are all different, but even if we are, we can glean from all the information and ultimately find solutions for ourselves. So, that in itself is a godsend also. Everything you say helps Hanny.

I still have those dark lower parts to my inner labia. I asked her if the clob would make them go away. She said, "I hope so". But, they're still there. They faded away a bit, but now they're back. Wish I knew what they are. Oh well, will find out one of these days.

Thanks Hanny

Micheline,  could it be that the dark spots are what they call blood blisters?  I had a few, but they automatically disappeared. 

I wish I knew Hanny. They're like running down the edge of the labia from mid-point. Have no idea. I thought it was maybe the sitz bath with baking soda, so I stopped the baths just to see, but that's not it. All I'm using is the clob and the coconut oil. And I've got atrophy. Had trouble defecating this morning. It's very tight. I have an appointment on April 18 in 10 days to see her. Hope she can do something. Going to the store today, might look for some borax. What else can I do.

Thanks Hanny.

Baking soda as far as I know is fairly innocent.  (This morning I drank a teaspoon in warm water plus some lemon juice.)  (after all, it's also in baked goods) 

?Do realize that the maintenance of LS is long term and that it also takes time to come to a reasonable good result.  I just realised that the other day, when I noticed how much I had left undone in my work, just because I went through this struggle with LS.  I'm talking about a couple of years.  (It takes physical and mental effort to come to terms.)

?Borax is of a different strength and my body responds to the smallest amount.  I have to use little.  But LS likes variety, so I switch so now and then - baking soda for a while and then borax for some period of time.

?Curious about your gyno appointment.  Keep us posted.   

Hi Hanny,

I've been reading all morning. Yes, it is all consuming for me at the moment. I agree and I'm less afraid of baking soda, although not knowing the interactions between that and other things.

Yes, I so agree with that. I have a little business, a shop on Etsy crocheting and selling baby and doll apparel. It's been a month now that I haven't done anything in that regard. Yes I can so identify with you with everything you're saying.

This disease changes every day looks like. Now sometimes I'm having trouble urinating, for instance, it doesn't seem to want to come out. I had a look and I see two white lines just above the urethra. It looks like lesions are forming over it, but not sure because sometimes the urine comes out ok. I should put some clob on those to see, but I'm not sure if it's going to make it worst or better. That's the frustrating part. You just don't know.

If I remember correctly, you use 1/3 cup of baking soda in a full bath, and 1/6 cup of borax in a full bath? Do you do this every night?

I wish I had a gyno appointment. No, it's an appointment with my GP. I have that appointment with the Vulva clinic in 8 months. In the meantime, she doesn't want to refer me to a gyn becaise she says the clinic is the best place to go, so she takes it upon herself to treat me. That's fine, except that if she would have prescribed the clob from the beginning, maybe I wouldn't be having all these problems. I was on the weak hydro-cortisone 1% for a year which didn't do much.

Thank you for asking me to keep you posted. Very thoughtful of you.

I would be interested in doing the borax and I may get some, just a little leery about using it with the clob. Maybe as Anna said, I think it was Anna, that using alternately, 1 day clob, and 1 day borax.

Did you decide on your own to stop using the steroid? Or did you decide along with your gyn to do it?

Thanks Hanny. 

Go for Anna's suggestion - one day clob, the other day a borax bath.  There is absolutely no risk using borax in a bath.  Just don't add too much - 1/6 cup will do. 

?I take such a bath with either baking soda (1/3 cup) or borax (1/6 cup) every other day.  You may wonder what it does - it restores an imbalance.  The result is that these 'white lines' gradually melt away.  My gyno says: Keep doing what you're doing.  Because it works to keep LS at bay.  Eventually there was no need for me to use clob anymore.  Almost all evidence of LS had disappeared.  No need for clob anymore. 

Well, that's exactly what I wanted to hear, that there's no risk using borax in a bath. Do you take a sitz bath or a full bath?

It restores an imbalance of what exactly?

I bought some borax this afternoon. I was wondering if I could find it here. Well, I found some just around the corner here at Metro. It says Mule20Team, Sodium Tetraborate. Is that the correct one? Just want to make sure.

Ok, well getting there. The clob has done nothing to take the white away. I have white around the clitoris and a bit on the perinium. I've been taking clob for 3-4 days now and it does nothing. So....

I have a question. What do you use when you take a shower? Isn't there a risk of soap dripping to that area? I'm just tryng to piece all of this together and come up with a routine I can live with combining the showers and the baths. Wouln't all that water just make your skin dry? Just wondering.

You're such a help Hanny. I hope I'm not bothering you too much.

You're a sweetheart.

Thanks so much.

 

I take full baths.

The imbalance is about pH.

​You bought the right borax.  I use the same.

​I use no soap.

Thank you so much Hanny for your valuable information. Will update again. Thank you again.

Hi Hanny,

Just got a call this morning from guess who? The Vulva Clinic. I got on a cancellation to go on Thursday of this week. So relieved. I seriously didn't think it would happen and that I'd have to wait for 8 months, because well who would cancel such an important place to go? Anyway, I'll be so relieved to be checked for cancer, that was my biggest concern. That will take stome stress away.

And this morning I was to receive my Emu Oil I ordered from Walmart with a small pillow. Well, I only received the pillow. It was shipped in two shipments and the oil might be lost. I nearly cried. I was so waiting for it. I hope Walmart sends me another one, or refunds me my money, unless Canada Post finds it.

Had to use the dilator early this morning because I got smaller again. It seems to happen during the night. I don't know why. Maybe because during the day you're walking and moving more? Was it your experience? Anyway, got scared again and ran for the dilator.

Nice to be back on here with some good news.

 

Congratulations!!!!  Such good news.  Instead of 8 months only a few days of waiting for your appointment.  ?Only a few days more to 'manage' without medical guidance.

Thank you Hanny and none too soon. I'm starting to have problems urinating and I think there's some fusion over my urethra, but I find it hard to see. Oh well, I'll be glad to be there so it can be resolved hopefully.

Will let you know what happens.

Thank you for your excellent advice.

and all who gave me and are giving me support through this ordeal.

Hi everybody,

Hi Hanny,

Well, I went to the Vulva Clinic 3 days ago. No sign of cancer and so relieved about that. I was given Clob as an ointment to put on every night for 3 weeks and after 3 times a week. I have a follow-up in 6 months.

The doctor said the Clob in the cream is not as good as the ointment. She also put me on HRT (premarin in cream form inserted vaginally and rubbed around the opening and a bit inside at the opening) for the atrophy twice a week. At the clinic they said using coconut oil as an moisturizer was ok. She told me that what was lost in the fusion was gone forever. I told her it did unfuse a bit a couple of times and she said it would just fuse again which it did. She said the Clob was for the rest of my life. So far, the Clob hasn't helped with the white. The dark on my inner labia has faded again.

The premarin cream which I insert twice a week seems to work for the atrophy and has softened the tissue quite a bit. I've just started so have to give it time. Told them I use a dilator but got no response to that. Want to go back and ask more questions. The appointment was at 9:00 which is not a good time for me. I was very nervous to say the least. I'm still trying to wrap my mind around this. Still can't believe what's happening. I didn't mention borax or baking soda, as I'm still at a cross-road with that. I want to incorporate the baking soda baths but don't know if it's ok with the Clob and now the Premarin treatment.

Happy Easter everybody!

 

My obgyn perscribed Estrace cream inserted once a week. Keeps me lubercated

Hi Brenda,

I've just started with the Premarin estrogen. I'll let you know how it works in a few weeks. Apparently, takes a few days to be effective. How long have you been on the Estrace? It has made the tissue a bit softer, but too soon to tell exactly.

Happy Easter to you and to all on this forum. 

?You've seen a specialist and your have a start with globetasol ointment.  Medical school may not talk about 'unfusing' so it's good to keep that to ourselves. 

?I have unfused and that's a fact.  Most of my bottom parts have restored themselves to 'normal'. (when everything functions well again is what I mean) And that's with the help of at first baking soda baths and rinses, later borax. ?I started with the rinsing after every bathroom visit and noticed the turn around.  Dilation was on the advise of the gyno.  I also use hormone replacement.  

?I just did a twenty kilometer trip on my bicycle with ease.  No problems sitting on the bike.  It went already better than last year. 

?So, Micheline, I wish you lots of improvement in future.   

Wow, that is amazing Hanny. Yes, the fusing will bug me until I do something about it. That's too bad about the medical school. I bet if they were in our shoes, they would find a way to unfuse.

Did you slowly incorporate the baking soda and borax at first with the clobetasol? This is the part that I'm at a loss about. We're talking about 5 things -- the clob, dilation, estrogen, baking soda, and borax.  Well, if you leave out the borax for now, it's at least 4 things. Or did you suddently drop the clob in exchange for the baking soda and later borax? The scheduling of everything is the hardest for me.

Hope you had a nice Easter Hanny!

You are absolutely right - to incorporate all at first looks like a full time job.  But now I do for instance dilation on Wednesdays and Saturdays.  The baths every other day.  The rinses after every bathroom visit.  And so on. 

Thanks Hanny. the easiest way will be to wait until the 3 weeks of doing clobestenal every night is over. And then, after that when I do it 3 times a week, I can do the baking soda baths during the day on the alternate days with the estrogen at night. I guess it confirms what I had read about women talking to women a lot and that in return enables them to find a solution.

Hi Micheline,

I posted a really great article earlier in the thread that talks about fusing vs atrophe. I found personally it to be extremely helpful. And as Hanny said, and many of us can atest to, unfusing is possible. That does not mean we can never fuse again, but in following a treatment that works for us (we're all different) we can hopefully prevent it from happening again. Good luck!!

Hi Alistar,

So very nice to hear from you! I missed you! Ok, I shall look into it. If I can't find it, I'll come running after you ok?

Thanks Alistar.

Internet can be sometimes dicey here in Vietnam...plus my 2 year old daughter was on 1.5 weeks holiday from school. But I'm back I wish I could tag people to the article, for me it really was so helpful and really helped me stay positive about this disease. But if you can't find it, do come running and I'll try my best to guide you to it!!

I've looked and looked and scoured the thread and can't seem to find it. Is it a link? Can you provide it to me here?

That's what I'm trying to do is find a schedule for my treatments I can work with. Right now, I have 4 treatments -- clobetenol, estrogen, dilation, and baking soda baths. After my 3 weeks of applying Clobetasol every night is over and is down to 3 times a week (I chose Monday, Wednesday, Friday), I can do the baking soda baths in between during the day along with the estrogen at night (this idea was given to me by Anna with great thanks). The dilation I have to do every other day, but I can do that anytime during the day.

I guess for me it's going to be tricky to apply both the estrogen and clobetasol together at night every night until May 4 when the 3 weeks are over. She showed me how with a picture on a piece of paper, but it's still going to be tricky to actually do it. I'm surprised they don't have an actual model of that area, something out of clay or plastic to show exactly where to apply.

I'm going to start the rinses after bathroom visits. I hope I eventually see changes like Hanny did and many of you. I hope it doesn't intereact with the meds. That's what I'm afraid of.

Thanks.

 

I had narrowing, not of the vagina, but the entrance was really small, caused by the inner labia dkssapearing and the pereniuim scarring.    I could only use about the half size dilator and as scar tissue doesnt stretch it didnt help much.      I opted for the plymouth procedure, done at plymouth hospital, and the results are brilliant.    It took me about 5 weeks to get over the op, the stitches were itchy, but a massive improvement.

Hi Everyone,

I promised I would check in and elaborate on my progress. May 4, was the deadline finishing the 3 weeks of clob every night. I worked out a plan after that of clob 3 times a week and Premarin twice a week on alternate days. I use the largest dilator 2-3 times a week. Don't have a problem with the dilator but I think it's because I've had 3 kids so I was quite open to begin with. I use 1/3 cup borax in a full bath on alternate days to clob days and I use Emu oil mostly now. I have one free night which is Sunday and I just relax in a bath of warm water only.

Everything is stable thank god. The color has come back 100%. There is still a bit of scarring on the left of the clitoric hood, but nothing big. The shrinking didn't come back, but the doctor at the Vulva Clinic told me that half was due to LS and half due to age. I am 76 years old. So, I'm ok with that as long as it stays stable.

As far as the fusing, sometimes it unfuses a lot, and then it fuses up again and it goes back and forth. Not sure what I can do about that. Not too concerned about the fusing. I had what they call an elongated labia on the right side which did bother me, and now because of the partial fusing which has shortened it quite a bit, it doesn't anymore. Don't know if you could call that a blessing. Anyway, as long as it stays the way it is.

I don't have a need for rinses. Next, I'm going to try to cut down on the clob to twice a week, but maybe should wait for my next appointment at the Vulva Clinic in November or my new GP when I get one.

One thing that I'll never understand is that I've never had any pain or burning. Just freaked out at the beginning when I took a look and couldn't believe what I was seeing -- white, cracked open skin, redness, etc. Later the itching and scratching, but never any pain or burning. I had one flare-up one time when I tested myself with sugar and had a huge circle on my backside which was red with white splotches, but then after that nothing. I've been staying away from sugar ever since and it never happened again.

At one point, I thought my clitoris was gone. I thought oh well, it's gone forever. Then one time when I was applying the clob I put a bit of it on the area just for a second. The next day, it appeared. Mind you, it's not the size it was before, but it did come back. That seems to work for me. I rub the clob just a bit, not long, and it seems to have done something to bring it back.

Hope you're all well, and coming along ok.

Thanks, Nelsmydog!  Good to know there are options for perenium scarring.

Hi hanny32508 and everyone. 

I've used clobetasol ointment for the last 6-7 years to control my Lichen Sclerosis, but I started having bad side effects and had to stop using it. I would like to avoid more prescription meds, so I looked around for something natural and read about sodium borate.

I've been trying to use it for about a couple of weeks but I keep having a problem with irritation from it.  It seems to help with the Lichen Sclerosis pain, but the pain from the irritation is just as bad, and sometimes I can't tell which one is causing the pain.

 I'm very sensitive and knew I couldn't tolerate the saturated solution, so I started with a teaspoon of borax in 4 cups of distilled water in a sitz bath for 15 minutes, then I cut it down to 1/2 teaspoon in 5 cups of water, but was still irritated.  Then I read your posts where you said it irritated you and you used only small amounts, so I cut it down to a scant 1/8 teaspoon in five cups of water and only soaked for 10 minutes and that was better, although still some irritation.  I also mixed up a weak solution (about 1/64 teaspoon of borax in a cup of distilled water) and started rinsing with it on some bathroom visits, but that was irritating too, as it seems to have a cumulative effect. Maybe I shouldn't try to rinse off right now and just do the sitz bath only every other day.

Do you rinse off after your tub soak, or do you leave it on?  About 45 minutes to a hour after getting out of the sitz bath I start feeling the irritation and if I don't go rinse off, it just gets worse. I'm wondering if I should just rinse of immediately after getting out of the sitz bath.

Do you, or anyone else, have any advice for me?

Thanks, Susan

 

Hi, please may it ask you what, we've the bad side effects

Did you suffer?

From using the steroid ointment,

Xx

Hi Susan,  I never used steroids, so I don't know if you are still experiencing withdrawal from them.  I have heard that some people have had quite a time wtih it.  I had always been very sensitive and couldn't even tolerate my extrogen cream, but after I started the baking soda baths (1/3 cup in a tub) my sensitivity went away.  I was only using the baking soda, til I found out about the Borax treatment, so by that time, perhaps the baking soda helped me tolerate Borax. If you haven't already, maybe you could try that for a while then try the borax again later.  By the way, I don't rinse them off after applying or tub soaks.  Also, are you applying emu or coconut oils?  They could help as well, and are both very soothing.

Initially I started having excessive, uncomfortable bloating and abnormal bowel movements.  I went to a gastroenterologist who did blood tests, a colonoscopy, and a CT scan, but he couldn't find anyting wrong. 

Then in addition to that I started experiencing lower abdominal pain, diarrhea, and back pain.  My family doctor thought it might be my gall bladder, so she sent me for an abdominal ultrasound, and then a HYDA scan, but they showed nothing wrong.

Then I noticed that my symptoms were much worse on the mornings after I used the clobetasol (I was using it two times a week).  I looked online to read about the side effects, and read that it can cause the problems I was having if you've used it a long time or use it improperly.

I wasn't using it improperly, but I had used it for 6-7 years without a break.  I asked my gyn one time if it was safe to use it for a long time, and she said that because I was only using it twice a week that it was fine.  Obviously she was wrong.

Since I stopped using the steroid  2-3 weeks ago those problems have almost completely gone away.

Hi Anna.  I don't know if I'm having withdrawal from them or not.  My gyn recently moved away and I haven't got a new one yet. I did talk to the nurse at the physicians group where my doctor practiced, and she just agreed that I should stop the clobetasol, but she didn't offer any advice.

I think I will switch over to baking soda for a while.  Last night I was hurting, and in desperation I mixed up 1/16 tsp baking soda in 1/2 cup of water and rinsed with it.  I started to feel better right away.  Does that sound like too much to use at every bathroom trip?  Maybe 1/32 tsp in 1/2 cup water would be safer if I'm going to use it often. Or, is every bathroom trip too often?   Also, does 1/4 teaspoon baking soda seem like enough for 5 cups of distilled water in a sitz bath for 15 minutes.  I thought I would do that every other day.  I prefer a sitz bath to the full tub.

I know this sounds weird, but I've tried several oils (olive oil, neem oil, one other I think, and glycerin) and they always feel uncomfortable and make me hurt.  I would like to try the coconut oil though.  Maybe I will work up the courage soon and try it.

Thank you for your advice.

Hi Susan, So glad to hear that the baking soda helped.  During the day, I rinse after every bathroom visit with a solution of baking soda.  I add ¼ teaspoon to a perineum bottle that holds 8 ounces of water, and that lasts me for about a day and a half.  I just lightly spray it on then gently pat dry.  Regarding the sitz bath, not sure how to compare that to a tub, but maybe you could try a full teaspoon of baking soda and see how it works for you.

I think you will like the coconut oil and also the emu oil.  They are both very soothing, and apparently it's good to rotate them. I've tried other oils, but these work the best. One lady on this site said her doctor told her that LS makes the vulva very dry, so moisturizing with these pure oils is very important.

Hi Anna.  I'm not using that much baking soda, but since I'm so sensitive and I've just started using it, I think I'll just gradually increase the amount.

I used 1/16 tsp in a cup of water yesterday and today for rinsing, and only 1/4 tsp in 5 cups of water for a sitz bath yesterday.  I think I can probably go ahead and  increase to 1/2 tsp in the sitz bath tomorrow. I'm going to increase the time from 15 minutes to 20 too. I've ordered a peri bottle for rinsing, but haven't received it yet.

I kept thinking about what you said about coconut oil, and I happened to have some, so I tried a little last night and it probably helped. I feel a good bit better  today, so I'm going to use it again tonight.  

Thanks again.  It helps to get advice from someone who has experience with these things.

Wonderful!  This site is such a blessing.  Can't tell you how many women helped me when I was first diagnosed.  It's a drag, but it will get better, so that's the good news.

One last thing to consider (besides diet and cotton panties) is getting toilet paper that is not chlorine bleached.  I found some on Amazon and have been using it for several months. Don't buy recycled TP- some awful chemicals in those.

Yes, this site and the people here are a blessing.

I eat almost no processed sugar, no gluten, and no caffeine. Is there anything else I should avoid? I try to have some alkaline food with every meal, but I'm sure I don't eat enough.

I have worn loose white cotton panties for a long time and wash all my clothes in a detergent for sensitive skin (not sure if I can mention a brand name here) and double rinse.

When it comes to toliet paper, you are preaching to the choir.  I decided years ago that chlorine bleached toliet paper was not good.  I did buy unbleached toliet paper for a while, but it's a bit expensive.  Then I discovered toliet cloths (sometimes called family cloth or reusable wipes).  You wash them and reuse them, and I really like them better than any toliet paper because they are soft.

I'm feeling stressed today, so I'm hurting some, but I'm still better than I was a few days ago. 

Dairy is also a no-no in auto-immune diseases.  I've also found that acidic foods and wine cause problems. Dang!  Whenever I cheat and have a glass of wine, I get some burning from it.  It appears that they make the urine more acidic and therefore it irritates the vulva more.  Good to know you are feeling better in spite of it all!

Susan I started to use not baking power, but Biacarbonate of soda, 1/3 cup in about less then a half a bath full of water, from last Thursday, I am so thrilled at the results so far. I can see the colour coming back to both sides. We are taking photos every day as Alister suggested.

Today or tomorrow i am hoping my Borax will arrive

Anna, did you ever use too much baking soda and irritate yourself?  I foolishly did that yesterday.

I did my sitz bath with 1/2 tsp baking soda in 5 cups water for 20 minutes and I think that was too much. Then on top of that I had been thinking that maybe my rinse wasn't strong enough, so I started rinsing with the same strength you use (1/4 tsp in 8oz water), and that was way too strong for me.  By late afternoon I was burning.  I rinsed with water and used coconut oil, but had burning all evening.  I redid the water and oil at bedtime and it finally calmed down and I was able to sleep.  I'm better today, but still having some mild burning. I'm going to drop back down to the lower levels of baking soda; it seems that is all I can tolerate right now.

It's a shame you can't enjoy a glass of wine without suffering for it.  I have drank highly alkalizing tea and had the same burning result. I sometimes use tomato sauce and small amounts of lime juice or vinegar in recipes.  Do those bother you? 

Hi Mary.  That sounds very promising.  I'm glad its working for you.  I tried to use borax first, but I'm extremely sensitive and it irritated me badly, so I switched to using baking soda only right now.  Anna suggested that after I use the baking soda awhile, I might be better able to tolerate the borax.

As I told Anna above I used to much baking soda yesterday and became irritated.  I prefer sitz baths to tub soaks and I'm trying to get about the same concentration of baking soda in my sitz bath that people get with 1/3 cup in the tub. I'm thinking now that 1/4 tsp or a little less in 5 cups of water is about right (if my figuring is correct).  I used 1/2 tsp yesterday and that seemed to be too much.

How long do you soak and do you using baking soda rinses during the day too?

Good luck with your borax.

Hi Susan,

Is baking soda the same as bicarbonate soda?

Where in this s world do you live, I am in the U.K. , we have Bicarbonate soda and baking powder.

Iam using Bicarbonate soda and Not a problem

 

Hi Susan,  I'm sorry the baking soda has been too strong for you.  I didn't have that problem even though I was extremely sensitive and irritated at first.  The only thing I can think of is that maybe you are still having issues coming off the steroids.  You are wise to cut back on the amount you used.  We are all different and so we react differently. Looks like you will need to approach this gradually.

Yes, sorry to say I have to avoid tomato sauce too, and I love Italian food.  But it's a small price to pay for healing, right? :-)

 

Yes, baking soda and bicarbonate of soda are the same thing.  I live in the U.S., and it's commonly called baking soda here.  I don't think it's a problem as long as I don't use too much.

Hello Susan

It is so encouraging thats so many of us are sharing , I have just found this site , already I feel more positive about dealing with LS

Love you all Lovely ladies

I increased the amounts I was using yesterday, and that was a mistake.  Maybe I'll be ok if  I just don't use to much.  I wouldn't be surprised if using the clobetabol so long is adding to the problem. 

Hi Susan

Iam soaking only for 10 minutes, I am doing twice a day at the moment , trying to blitze it, then hopefully settle down to a couple of times a week, I hate baths as well.

 

Mary, it's good that you can soak twice a day, but I'm afraid that would be too much for me.  I'm going to stick with every other day for now, but I think I can soak for 15-20 minutes.  Also, I've decided to just do the sitz bath only, and not try to rinse with baking soda on every bathroom trip.  I think using it frequently is a problem for me.

Hi Susan, I am having good results with avocado oil. I put a few drops of chamomile essential oil in and find it very soothing. Coconut used to suit me but now doesn't . Keep a few things in your arsenal and be prepared to keep changing them around.

Hello Susan, I've been off for a while so just picking up on the notifications now. Coconut oil didn't suit me, but I love jojoba or avocado oil (I buy the cooking stuff from the healthfood shop) with a 4 drops of chamomile essential oil per 100ml. keep trying and you will find something that suits you. Also I found it important to change as your body seems to 'get used to' things if you use them continuously. Keep trying out new things and then you'll find two that you can alternate. Good luck.

I would use vitamin  e oil instead into ur coconut oil