Hi everyone,
I was diagnosed with lichen sclerosus a few years ago butt after I was diagnosed I really had no symptoms for the last two to three years. Beginning about 6 weeks ago I started getting terrible flare ups with no letting up. Many of the stories I'm reading on the internet are so scary, I don't know if I should be reading them. My sister has been very ill and in and out of the hospital and my dad passed away a little over a month ago, is this it all stress related? I have had a steroid cream for when I do need it and now I've been using it every day. Do I use the steroid cream like it says daily or do I hold back because of the possible side effects from it. I can't get back into my Dr for a couple of months. I am really glad I found this forum and I'm hoping to learn more. Thank you
Look into the threads about Borax. I've been using it for a couple of months and now swear by it. Stress definitely causes flair ups. The Borax I've been using has been way more effective than any of the creams I've used in the past. Good luck!
Don't know what happened to my initial replay. It simply disappeared, so I'll try again.
Stress is definately a contributing factor for a flair up. Also the intake of sugar will do 'the trick'. Best result I have had using baking soda baths and rinses. That plus diet of no sugar, no alcohol, no gluten, limited diary. And I take hormone replacement.
I use the smallest amount of steriod ointment, at present not even once a week. When the temperatures rise above 40 degrees Celsius the LS seems to want to get active. But a very small amount will already calm it down. Just be careful not to use too much of the steriod cream, More is not better.
Thank you so much for the advice!!
I would suggest you use the prescribed steroid meds as directed and see if it calms down. I was advised by my doctor to use more often at first then 2-3 times a week.
I don't think you should experiment with "borax" without discussing it with your doctor.
Call your doctor and speak to nurse if you need help asap.
Hope it gets better for you!
FYI - Also- I tried the baking soda and immediately developed a yeast infection. I haven't had a yeast problem in years so I think the baking soda affects the ph balance.
I guess I should've mentioned I did discuss it with my doctor and she was so impressed by my results she's planning to share the info with a couple of her other patients who are also dealing with LS.
Mary, we're all different. So can only speak from personal experience. It simply is not "one size fits all", What works for one, may not work for another.
A few things are known though: LS likes an alkaline environment. The urethra prefers it more accidic for instance. Depending on what my body tells me, I rinse with baking soda and sometimes with apple cider vinegar. Both adjust the pH balance.
I hear you and I have heard others advise about baking soda and 'borax' . I know we are here to share info and experiences and knowledge. I think it is important to think critically especially when it comes to our health care and consult professionals. A physician should be advising on all methods of treatment, that is why I say to ask them before trying these home remedies, that is unless you distrust your physician more than you trust someone on this forum. It is very useful to discuss my problem with other women with this disease but I think we should be careful in giving and taking advise that may not be advised by the medical community or may interfere with the prescribed medical treatment. I know many may have good reason to be frustrated with their condition and the attention they get from their physician, but we must continue to do our research and look for what can treat our medical problem with the help of our medical professionals. I will discuss the baking soda at next appt, for now I am just washing with wet towel after urinating and applying Aquiphor oitment as a moisturizing barrier for the skin.
I have aquaphor, I think I have the same stuff as yours, at least I hope it's the same stuff.. Do you use the steroid ointment? And I'm going to ask my doctor also about the baking soda. Have you ever heard of emu oil?
What is this fusing and shrinking that many are, writing about? Is that from using the steroid cream too often?
Do you ever do a baking soda bath or make like a paste and apply it?
My experience is that the medical world does not know all. Therefore I think that the patient has to stay alert and observant as well. Why do we all do breast examinations for instance. It should be the same for the vulva area. But at present this is not at all promoted by your doctor.
What's more, I now know of some gynos who suggest the use of baking soda. Cause glob can not do it all either. There is simply not enough knowledge about our condition yet. And no research is done either.
I have done that just recently, understanding that baking soda has a similar effect as borax. The spot above the clitoris still gives some problems especially while it is so hot, so I tried it to calm it down. It calmed things down, but have not yet made observations.
Hard to say whether the steroid cream gives at times a negative result. Fusing is part of LS. Shrinking happens as well. That's why many of us try to de-fuse with for instance baking soda and apply coconut oil to prevent from fusing again. (doctor encouraged) I dilate to prevent from further shrinking. (doctor's advise) and take hormone replacement to keep all flexible.
Might be a dumb question, but could you please explain the fusing to me? Thank you so much for your time. I really appreciate it
Hi Lil09,
I have just read your message and all the following comments. I have to be honest, this forum has helped me more than anything else. I have learned so much and listened to all the honest advice that people have kindly given me. Hanny is right, what might work for one person might not be the perfect solution for the other, but we live and learn. I have just had an appointment with a gynocologist, thanks to a very kind lady on this forum. As a result, for the first time in quite a while I feel I can count on someone in the medical profession to help me when I need it. She also advised that if I have a flare-up I should not be wary of using the dermovate ointment until things improve. We have to consider it as our friend and not our enemy!! Otherwise, twice a week. I try to stick to Wednesdays and Sundays, but occasionally I forget which is not a good thing for me. The very best of luck; we are all rooting for you. Wendy
Thank you so much Wendy! All of the responses have helped me so much. I have been so down and out and worried these past weeks because I realized that it is so very real for me now, but I need to snap out of it and just do my best to keep it under control, as it is what it is. Is the Dremavate cream a steroid?
Well, what happens is that the left and right side of the outer labia start to stick together. (my inner labia was already non exisitant) That's why for instance in my case the opening to the vagina and almost the urethra completely disappeared, hence the dilation procedure in the hospital and continued use of a dilator afterwards and still every other day.
Would I have known all what I know now, perhaps I would have been able to prevent it from getting so bad. Thanks also to the accidental discovery of baking soda rinses, because I was afraid of infection after the procedure in the hospital, I'm now as good as fusion free and keep a regular maintenance of baking soda baths, baking soda rinsing after every bathroom visit and applying of coconut oil, and every other day dilation. All makes that it is very liveable. I can sit normal, ride my bicycle with a special saddle as not to irritate the sensitive area, and have intercourse with my husband. In other words, in spite of the heavy maintenance, I have my life back.
I am so sorry you have had to go through all of this. You have given me a lot of Hope and have helped me so much, and I thank you for that. I hope I can prevent this from happening. I'm learning so much from you!