Hi Sue,
Yes, I know what you mean. Maybe when the doctors don't know very much about it themselves (as seems to be the case with LS), they are less likely to provide much information or feedback. I was very interested in your use of the term "estrogen deficient atrophy". I did not realize that estrogen could also cause atrophy. I told my doctore (gyno) that my estrogen was most likely very low due to menopause and (get ready) the fact that I am still breast feeding. (Yes, I had a baby later in life.) But my doctor did not respond to this. I specifically called to ask whether I should also be using estrogen cream, and the doctor's assistant said, "Some women do that." Then she told me the gyno wanted me to continue with the Clob until the end of the four-month prescription period. I am quite frustrated with this response, which seems inadequate. If anyone else here has ever used Clob and estrogen at the same time with regards to LS, I would love to hear how it worked for you. Thanks very much to all.
Metta
Hi Dunkin girl,
i dont blame you stopping the cream, we all react different don’t we. I’m from uk I got the YES moisturiser not the lubricant version from e bay it’s on amazon or I think they have their own website, it’s all natural, lasts ages and has helped. It says it is for atrophy as well. A tiny amount of estrace on minora surely wouldn’t harm. I had read young children get LS before puberty and are prescribed oestrogen cream before menstruation. The Yes was ten pounds. X
Metta,
i have read L S is common in menopause due to lack of oestrogen and we can get it alongside L S . I never knew any of this either or about oestrogen creams I look back and think god I was useless not knowing anything about female things. At xmas after biopsy I was told I needed clob and vagifem but am frightened of HRT in pill or cream form. I didn’t know either but oestrogen is needed in our bits and the minora area needs oestrogen to stay healthy and is quite receptive of oestrogen. This should be all explained to us shouldn’t it, they want us to remain ignorant to our condition bit I think it’s best to help each other as losing our bits visibly melting away is a frightening thing.
Hi Sue,
Thanks for the info. I am going to check amazon and also go online to see if they have their own site. I may go back to trying a small amt estrace on labia minora. I don't want to lose any more if I can help it. At this time me labia minor on left side looks okay it is just on right side that it has melted. This is where I had the white patches, not so much on left. I am so glad I found this forum! I have learned a lot from everyone out there.
You’re welcome. Let us know if you put oestrogen there and if it helps. Same here LS started on minora and it’s there that it’s disappeared. X
My gynie told me many years ago to use oestrogen cream but I was too scared to, thought it would increase my chances of getting cancer. Maybe if I had done that I wouldn't be in such a bad way now. I think I would still be nervous to use it.
I’m the same Jan. I’ve read mixed reviews of using it. I worried about the cancer aspect as well. I was worried it would cause bleeding which I think like you I would be worried about.
The more I thought about it I decided against the estrace. I was a wreck waiting for breast biopsy and do not want to go thru that again. The docs can say it wasn't the small amount of estrace I was using that caused the cyst but I never had one before and am way past menopause. They say a cyst past menopause is rare so I still believe it was from the estrace, so no estrace for me. One doc told me no studies have been done on the use of small amts topically of estrace so I don't know how they can be so sure there are no adverse effects from it!
Difficult to know what to believe Sue. I have been taking HRT since I was in my thirties (I am 67) as I had both my ovaries removed at a young age due to cysts. Over the past 10 years or so I have only taken it 3 times a week. A gynie told me years ago not to stop as I was more likely to die from a bone disease than I was to die from cancer. So I have been really nervous about taking more estrogen. Although in my case seeing that I don't have my ovaries maybe it would have been OK. Who knows.
Hello.. New here...
I have just been told I probably have LS. I'm confused as I have no other symptoms than a slightly sore vulva. No itching and no white patches or visible changes ( I check myself lots ). wondering what the main signs real woman had to lead them to diagnosis.. worried about using steroid cream indefinitely if its not LS.
Advice welcome x
Hi I have LS and I don't get the white patches but more sore red patches have you had a biopsy
Hey Gillian. Thanks for replying. Yes same. Just one tiny red patch about the size of half a fingertip. Hasn’t changed in a month and no itching. Just feels hot. Have betnovate for a month then back at the docs. Then I’ll ask for a biopsy. Was hoping it was contact dermatitis as it came after using a frangranced loo roll.
Well that's interesting before I was diagnosed with SL I used some perfumed toilet roll that affected me so I would push for biopsy then you will know what you feel dealing with fully and what treatment to use
Hi Chive,
The only symptoms I had was redness all over my vulva and my clitoris was very sensitive. No itching or burning. I only had white patches after about four months but that was because the gyn I had at that time was treating me for fungal infection. He finally did biopsy when white patches showed up. Since then I changed docs and have been on clobetasol (started twice a day for two weeks then twice a week for nine months and have been on once a week for two years) I will most likely be on this for rest of life. Am using only small amount and it has kept everything under control although I have had labia minora on right side flatten some. But I never had any itching or burning like a lot of ladies on this site have had. It affects all of us a little differently. The doc would not prescribe the clobetasol until biopsy was done. It is a good idea to ask to have one done just to confirm diagnosis. Good luck and let us know how you make out
Thank you. Sounds similar. I don’t have any kind of pain. The burning feeling came and went and now not it’s more of a sensation. Can’t say it’s ever causes me pain or discomfort. Sex is fine and it’s only a small red area. I think I need a biopsy. Don’t want to be using steroid cream indefinitely if it’s not LS. And if it is I want to know for sure. Also. When I wake I can’t feel it. It’s after being up a hour. Wondering if it’s become psychological. This forum is a great help and support x.
The more I read your post the more it sounds the same as me Dunkin girl. No itching either or burning but red raw and flattening of minora. I use clob once a week to remember I use it Thursday evenings lol. Has your redness been kept under control? Mine seems still red but nowhere near as sore as pre clob.
Sue162 it seems we may be more alike as I use clob on Wednesdays so to remember! Yes the redness has been kept under control. Once in awhile I get a little red but specialist said that is post menopausal redness as it is not real bright red. She said the LS would be "Fire engine red"! But clob once a week seems to be working for me, hopefully it continues.
My gynie told me something interesting last week when I told him how Borax seems to help a lot of woman with LS. He said that Borax is used to treat women with Candida and lot of woman think they have LS when in fact they have Candida and that is why the Borax helps. I don't really know what to think of this to be quite honest. I recently ordered Borax and it arrived in the mail a couple of days ago. I am keen to try it as a lot of women on this forum have had great success with it. My itching has gone with the mixture of 4 Tablespoons of Organic Castor Oil, 2 DROPS of Lavender Essence oil and 1 DROP of Lemon Grass Essence oil. it is vitally important not to exceed the drops and to use a small dropper.
Hi Jan,
That is very interesting. I have been wondering how borax, baking soda and coconut oil help LS.
I just Googled Candida and came across the website of Amy Myers MD and read the section "10 Signs You Have Candida Overgrowth & How To Eliminate It". Although I do not know Dr. Myers and cannot vouch for her website, it does seem that she has a fair bit of experience in diagnosing Candida. One of the common symptoms she lists is "Autoimmune Diseases such as...". I, personally, have hypothyroidism which might be caused by Hashimoto's. Anyway, I am going to look into the possibility of Candida further. I am wondering if the ladies on this site who use Borax, Baking Soda and Coconut Oil might have Candida and LS simultaneously... or if these remedies specifically help with LS, even in the absence of Candida.
One comment left by a reader on Dr. Myers' website had the following to say about coconut oil:
"Just something I want to add to the article... and that's coconut oil can be very effective for some people. It contains Caprylic acid which is a potent antifungal and this helps kill excess candida yeast cells. Many people buy caprylic acid as a supplement, but I personally think it's better to buy a good quality organic coconut oil instead. It's also really worth checking out Linda Allen's 'Yeast Infection No More'. Her methods are extremely effective for overcoming candida quickly & naturally. You can find her video and guide at "the candida manual" (Google it) - Natural treatments are always better when possible."
I would love to hear some feedback on this from all you wonderful ladies (and men?) with LS!
Metta
Hi Metta
Very interesting points you have brought up and thanks for posting an excerpt from Dr Myers article. I had a bath for the first time with Borax last night. I was a bit nervous to tell the truth but all went well. I am not expecting to get any kind of relief or have the fusing diminish over night or anything but I will persevere in the hope that it does some good. I think I will also try the Organic Castor oil. The Borax is very expensive to buy as I have to order it online and the postage costs the same as the Borax. If I use half a cup in my bath water every night then the container will only last me a week or so. I think I will buy a spray bottle and use that instead. I think I have to dissolve 1/8 tsp in 1 litre warm water. I ordered the Borax from Blants Wellbeing & Lifestyle in New South Wales, Australia
Jan