Recently diagnosed with Lichen Sclerosus

Yes, its hard to explain. I have some itching on the outside but I have a lot of vaginal itching and where that is the doctor told me not to use the cream there because its for external use only. Sometimes I will go through the day and I will feel good, then make plans to be intimate with my husband and then all hell breaks loose.. I itch like there is no tomorrow. I have noticed one spot on the vaginal surface.. As you may know its hard to look while holding a mirror. LOL, but its not all the way inside and thats where it itches the most and thats where the pain is..I just thought this was all because of my hystorectomy and I have a bladder sling as well..Because of all of this I ended up with a severe UTI after sex. The swelling and redness comes about when there is sex involved and the symptoms last for weeks after, then there seems to be itching and more pain. Im now starting with depression and not sure how to cope with this.

I have all the symptoms along with the discoloration and parts of my labia feel dead to me. I also have lots of itching on the clitris.

 

I wonder - have you read some of the discussions on this forum?  For instance the discussion on "An experiment with Borax"?  It might give you some thoughts on how to add some different ways to your treatment of LS. 

?Another thing - while your LS is perhaps fairly active at the moment, it might not be good for your well being to have sexual intercourse.  Any rubbing will make matters worse.  With that - I hope you have an understanding husband. 

Thank you for chatting with me about this.I have been reading many different discussions. I'm still reading. Never realized how common this really is. Yes i understand about not having intercourse while it is flaired up, I dont need to make it any worse than what it is. Last night was a good night for me and so far today. I keep using the cream and my estrace hoping that will keep it at ease. I'm keeping faith that there is something out there that will help all of us.

P.S 

So far my husband has been very understanding. I couldnt ask for a better partner.But that doesnt stop the worry about what he is thinking. 

Good, the support and understanding of a husband makes a big difference.

?One thing kept circling around in my mind - did you mention pain in the vagina?  I would suggest for you to have that checked out.  Just to be sure it's only the LS that is bothering you.

?Me too, I'm still dreaming about the day that a real cure will be found.  However, there is too little research on LS.  So meanwhile I'm trying to make the best of it. 

Yes some pain, only during intercourse. I always told my husband it was because he was well in doubt, that made him happy. When i talked to a doctor about the pain and my vaginal discoloration he told me I had a hormone deficiency. The doctor told me to double up on my hormone pills and start with estrace cream. The symptoms just got more severe and thats when i went back to my OBGYN. Thats when he diagnosed me with LS. I feel pretty good today as I did last night too. But with all the discussions it sounds like i will have flare ups. one thing i have been doing, not sure if i should continue or not , but I have used triple antibiotic ointment in some areas to see it that helps.

I have had it once that I had to use antibiotics against a bladder infection.  It also stopped a flair up.  Handy at the time, but I don't think that constant use of antibiotics is the best answer. 

?What has helped me as well was to avoid sugar - goodies and such.  Next to that I went gluten free, alcohol free, and avoid most dairy products.  Haven't had a flair up since.

Im working on changing my eating habits. eating healthier and more water. Working on getting off the diet dew. That has always been my down fall. If you dont mind me asking, how long have you had LS? How bad is yours? And did you start with a very mild case? Mine is mild right now and I have seen photos of severe cases and it scares me to death.My mild case is bad enough and I feel bad for those that have it very severe.

How does your partner cope with this? Like I said my husband understands but when I try to be intimate with him, he backs away from me, like he is afraid to touch me. Its very depressing for me. Sorry, I just need to pick your brain.

I so understand what you mean - it wasn't easy for my husband either.  He was afraid to hurt me.  As a result all forms of intimacy were left out for a very long period of time. 

?In hindsight - LS did not come overnight.  I now know that it was left undiagnosed for a very long time, years I'm talking about.  It is therefore so hard to say how long I have had this.  And when things go well again you just as soon forget how long after the official diagnoses.  I guess it is about three years now that there was an diagnoses after biopsie.  By that time it was so far progressed already that all had closed up, only a small opening for urinating left. 

?Even with the Globetasol it did not prevent the fusing from progressing.  Only after a dilation procedure and after that the use of baking soda baths and rinses did ever so gradually the fusing disappear.  The last part above the clitoris was the hardest, but that was solved with the use of borax. 

?Meanwhile my husband and I can be intimate again.  All is almost as good as 'normal'.  But to reach this point I was close to depression.  This forum kept me from going down the deepest hole.  And I'm happy to communicate with other LS sufferers. 

wow. So glad things are turning around for you. I have a very mild case. Im thankful it was diagnosed early. I pray that I can keep it under control. I have gone about a week now to where the symtoms are quiet now. Its still there and I have a couple of spots that I can see,but they dont seem to bother me. Did you ever have it like this and how far between flare ups did you have? This formum has been good for me too. Just to chat with people who know what I'm going through. Its hard to try to talk to someone who has no idea. Sometimes I feel like I

have a STD or I'm being punished for all that I ever did wrong in my life. I just keep the faith and believe that this will clear up. I just pray there is something out there to help all of us.

 

It\s only LS thank god. (ha) One needs a good sense of humour with this.

I have been seeing a OBGYNever since my hystorectomy. He is the one who diagnose me.