Posted , 11 users are following.
Hello all,
I thought I had LS under control but I noticed recently that my labia is disappearing. Everything is caving in and getting smaller. Should I use the Clobetasol more often than twice a week?
I know many brave women have faced worse so I'm trying not to feel sorry for myself. But where will I be in 20 years is what I worry about.
Any suggestions? I'm seeing gynecologist next Monday for advice.
0 likes, 21 replies
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Guest mary09950
Posted
I know what you mean. I also thought I had this under control but recently realized my labia Minorca on right side has what I describe as "melted" and only the ridge is there. So far it is only that side but am sure more will go. I wouldn't increase clobetasol until you talk to your gyn. I am due next month for my check with my LS specialist. I thought about calling her and ask if I should come in sooner but do not think there is much she can do about this. When I saw her six months ago she mentioned that my labia is was starting to flatten out but she was not concerned. I think this is part of the whole process of LS. It is scary and I too worry how far this will go. I have started a list of questions for her. If this is what happens I wish she had told me that when I started seeing her three years ago! That way I would have been prepared when it did happen. I may still call her and ask if I should go in to see her sooner. Good luck and please let me know what your gyn has to say.
sarb73328 Guest
Posted
I feel the same way about doctors not telling you enough from the first sign of symptoms. And agree that there is probably little your specialist can do about it though anyway. I have had little information from GP and gynae - it's as if they leave it to you to take in what you are suffering from and then to do your own research. Not very helpful.
hanny32508 mary09950
Posted
From my experience - using more clob is not necessarily better. But then again, good to consult your gyno. Perhaps he/she can tell you where this all will be going. Keep us informed.
?
It remains to be a miserable disease. One moment you think you're doing fine and the next you start to worry.
sue162 mary09950
Posted
Hi Mary,
exactly the the same thing here, thought I'd turned a corner, I keep a check but about six weeks ago noticed structure has just melted either side of clitoris and is just flat like a slope no ridge. Very frightening. I went back to the clinic and they said to use once a week definitely but maybe twice so every Thursday pm I put clob on before bed. You can feel sorry for yourself, why not especially on here x
sarb73328 sue162
Posted
Your description of the 'melting' sounds the same as I have. The gynae said the 'valley' either side of clitoris had fused to itself and described it as 'minor', but a 'possible' sign of LS. So I still have no definite diagnosis of LS nor have I been prescribed steroid cream yet which really worries me. I have started trying Borax on the fusions and will go back to my GP to make a fuss when I am back from a holiday. I can only think their casual approach is due to their lack of knowledge of this disease and the fact that they cannot cure it.
sue162 sarb73328
Posted
Enjoy your holiday Sarb. maybe mention we have clob on here to your dr and that it helps, although didn't stop the melting.
I agree they don't have a lot of knowledge or the affects it has on us just waiting to see if anything else just melts away and how frightening it is to see it happening. I said to my husband 'imagine a man checking himself and his bits melting away how you'd feel', but it's true though. X
sarb73328 sue162
Posted
sarb73328
Posted
'clob'! not club!!
mary09950 sue162
Posted
hanny32508 sarb73328
Posted
ann67814 mary09950
Posted
Personally I regret not using the clob more often like you I thought everything was under control as remoteness was under control, but now only have a small flap of one labia, but I don't think that the steroid will reverse the fusing.
All very difvicult!
hanny32508 ann67814
Posted
Guest hanny32508
Posted
hanny32508 Guest
Posted
Yes, it worked for me and it is still a form of maintenance for me to control LS. Doctors won't necessarily tell you about it. Read the discussion on this site "An Experiment with Borax" It will tell you the various ways people use borax.
Guest hanny32508
Posted
hanny32508 Guest
Posted
I was totally fused up originally. Went for a dilation procedure. After that procedure I was afraid of infection and that's when I started with bicarb/baking soda. To my surprise the white patches and thus the fusing ever so gradually melted away. It took a long time in first instance, but it worked. The last part was more difficult, especially around the clitoris. When borax was discovered. I can't handle a very strong solution, but the diluted version mentioned earlier did the trick. Meanwhile I'm fully functional and normal again. The skin has restored itself well. As moisturizer I still use coconut oil.
?Thing is - depending how severe, it takes time. It won't happen after a few tries. I had to be very diligent. Now four years later, I can sit better, have almost no discomfort, but need to continually take care of my LS as described.