Fusing now

The discussions seem to always be open. 

I do believe that as long as someone is writing and someone else is reading, that the discussions are still "open".

Just post your questions or concerns and check back in a day or two to see who has answered.  : )  I too am "new" and I check these discussions to learn and I'm finding it very helpful.  I'm definitely less discouraged than I was a month ago.

Hi, I am new also, I don't know what "fusion" is ... Is there any preventive measures to stop or mitigate it?

Many of us, including me, tend to think we have found the answer by using baking soda and borax.  And coconut oil/emu oil/other. (read other posts on this forum about it, I would suggest)

​Fusing is when labias start to stick together.  Not funny really. 

Hi, I am new also. I have suffered 18 months of stinging, burning and pain. My GP diagnosed vaginal atrophy and prescrI bed several different creams and oestrogen pessaries, nothing helped. I was extremely low continually crying especially when having a wee. At last an appointment with gyno, she took one look and diagnosed LS. What a relief. I had a name for it. But some damage already present, fortunately at the top end opening of labia majora. I was prescribed dermovate ointment twice daily for two weeks, the once a day for two weeks, followed by twice a week for eight weeks. I have got to first week of once a week. Burning, stinging almost completely gone but now have fusion of labia, cannot find clitoris. Frightening believe me. Hoping for earlier appointment with gyno. Does anyone know if an operation is necessary for fusion? So pleased I have found this forum.

Anne, I would think that regular dilation will help you at this point.  It's to keep the vagina open and at the same time prevent blockage of the urethra. 

?I was at one time totally fused over and had to undergo a dilation procedure in the hospital.  It is a procedure that does not involve cutting it open.  Would I have know about regular dilation earlier it would not have had to come that far.  I still do regular dilation. 

?

Thanks Hanny. Do I have to purchase a vaginal dilator?

Sorry if I sound a bit 'thick' about this but after all this not knowing

what I had wrong with me, I am in shock and recovering from the

18 months of excruciating discomfort. Perhaps you get give me

more information about this fusing and how using a dilator helps.

You can PM me if you prefer. I am 64 and had never heard of this

condition. My doctor told me she did not know much about it as

they do not see it often in their surgery. Thank you.

Very understandable that you were in shock.  However, the more you learn about LS the better you also will feel about having to cope with this condition. 

​Using a dilator, they come in a set with different sizes, helps to gently stretch the vagina opening to the normal size.  For lubrication I have used coconut oil.  It needs to be done in a gentle way of course and it is recommend to start with the smaller size. 

 

Hanny and forum, I am asking for practical advice because IIcannot see my doctor for at least two months! Question 1 How frequently is it advisable to use clobetasol in the beginning of severe symptoms; burning, itching etc? I have tried to use minimally but symptoms just come back! Q 2. How will a dilator stop Labia majora fusion?? Q 3 how do you use the baking soda and do you alternate between it and the Borax? Q 3. I am using Vit E until the Emu Oil arrives, does that help in prohibiting fusion? So many questions and Very glad. I found you all! Thanks in advance for advice, information and your response!

Hi Joanna,

?1) In the beginning you may have to use the clob very regularly.  I don't know how often you use it at present, but for instance - once fairly under control you may go to the maintenance level, which is twice a week.  You may not be at that point yet and then you may have to go every day till all calms down.  Thin layers I would recommend at all times. 

?2) LS wants to narrow the vagina.  So if you still have an opening it was recommended by my gyno to gently stretch the opening to its original size.  I still dilate every second day, with coconut oil as a lubricant.  I may have mentioned it already - it also helps to keep the urethra free.  It's a complicated thing down there, but this works for me.  No more bladder infections either.

?3) I put 1/3 cup of baking soda in a bath.  It benefits my whole body actually.  You can also use Epsom salt and drink lots of water during the day.  At present I use 1/6 cup of Borax in my bath.  It helped with cleaning up the last bit of fusing.  At present I alternate the above mentioned two.

?3A)  Next to baths I also rinse after every bathroom visit with three pinches of baking soda in a Perin bottle.  Deb dry and cover with a small amount of coconut oil.  I have also used emu oil when the area was much more sensitive than it is now. 

?4) The fatty cream/emu oil/ coconut oil/jojoba oil helps to keep the layers apart.  Plus it makes the skin more flexible. 

?I hope this helps you on your way.  LS requires constant maintenance, but after a while it becomes your daily routine and it will become easier to live with.  Important is that you take good care of your bottom parts and thus prevent further discomfort and misery. 

?Have you cut out most added sugar in your diet already?  Checking your diet helps as well. 

IN addition - sometimes you may feel a bladder infection coming on.  I try to avoid that from becoming more serious as soon as possible by using a small amount of apple cider vinegar in the Perin bottle instead of baking soda. 

Hanny, you have outlined the routine very well.  I have followed this routine ever since diagnosis - that is, after daily use of clobetasol for two weeks took the extreme itching , soreness and white 'figure 8' area back to almost normal feeling and appearance.  I do exactly as you suggests works for you and it works for me too.  If I experience flare-ups, I apply the clobetasol 3 or 4 times per week until it is under control. I agree with your theory that sugar makes it worse and have reduced sugar to almost nil.

I see my gynecologist once a year and also attend her vulvar clinic and she does a colposcopy once a year.  So far she is pleased at how I am doing.

i am 78 and have had LS for 3 years. 

Joanna, wishing you good success.

I am so happy to read that you found a routine and that it helped to improve and make LS better to live with.

Hanny, thank you for your very clear and detailed explanations! I am getting on board with the Emu oil and Borax. I am now using the clob daily, started about one week ago. I saw my doctor for the first and only time 6 weeks ago when I was diagnosed. She basically said to "use it daily until the symptoms abated and then sparingly and infrequently after that to keep the symptoms in check". I cannot see her again for three months so I am now using a very thin layer once daily for one month. Then I will try every other day and see what happens. Thank you again, I don't feel so alone and confused thanks to you and the woman in this site!!!

You're most welcome Joanne.  Hope all works out well for you.

Hi Hanny, I am not a bath person and I was wondering if there is anything else or another way to accomplish what I need too to keep LS under control or at bay? Also, about fusion; can you see it starting, what does it look like or feel like and does it come on over night? The more I read the more I want to try and be ahead of what might come .. LOL Thank you in advance for you response!

Well, you can take a sitzbath for instance.  I have used a sitzbath while traveling with our RV.  But maybe you don't like that either. 

?Did I mention rinsing with the help of a Perin bottle after every bathroom visit. Especially early on I find this helpful to keep LS under control - three pinches of baking soda, or borax.  Already mentioned I see while scrolling back in this discusson.

?Can't think of much else really. 

?

Hanny, I looked at myself in the mirror and fusion has been taking place under by nose! I was wondering why I was feeling like bugs were biting me! I now understand why you speak of dilation! How am I going to urinate? Is it reversible, I guess I am asking if tubs and dilation will "free me up"? I gather the Clobetasol doesn't stop anything, just abates the symptoms? I am trying not to freak out, but it is hard at this moment! I just wrote to my doctor and hopefully I will be able to get in to see her soon. I am in the US, how/where do you get a dilator?

Dilator can be ordered from Amazon.

​Try concentrated Borax solution.  Read discussion on this.