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.
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.
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.
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
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!
I agree that I don't think increasing use of clobetasol will change anything. Like I said in earlier post, when I saw LS specialist six months ago she mentioned that one of my labia had syarted to flatten (that is what she called it) But did not seem concerned and did not tell me to increase my use of clobetasol. I have been using it once a week like ordered and it has kept redness away but what I call "melting" evidently continued as I only have ridge left on right. Will see her again in about three weeks and have list of questions I hope she can answer.
Yes it is a scary disease and what is even scarier is that not much is known about it. I am so glad I found this group! I was feeling so alone before but now have all you to talk to and learn from. Thank you all so much!
It will be interesting to see what your dr says so I will keep following the thread. Loss of ridge that's a good description, I think we are experts on this now and what looks correct for us might not be for someone else. I see my dr January next but use clob once a week. The clob does help with the redness you're right x
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.
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.
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
Thank you Sue. I will mention club to the doctor. Yes indeed - a man would be horrified just as we are. That was one of the things I wanted to say to my gynae when he was so casual!
'clob'! not club!!
I just got call from LS specialist office saying they need to cancel appt for Sept 18 but good news is they gave me an appt for Sept. 5th. So hope fully I will have some answers sooner then expected. That is if she has the answers! And you are right I think all of us are different. Will keep you posted.
My doctor previously recommended 2-3 times a week . But if I feel it happening I am using it daily until dr visit on Monday.
Would you able to tell - Is it the labia minora or the labia majora that is meltin away?
You might be very right Sarb, to think that the knowledge about LS is limited. Good we have this site to compare notes.
My experience is that the fusing only went in reverse when I started to use baking soda rinses and baths and later borax.
Did this work for you? I am going to ask LS specialist about this when I see her. I wish she had told me about baking soda rinses and borax. I am pretty sure it is the labia minora and so far only on my right side.
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.
Thank you for the info. Did it keep redness away? What about the fusing did it help that?