36 years whit LS

Im doing just fine. Idont feel anything, no hurting itching. My klitoris is gone   but no symtoms.

See my reply to Sheila below

does testosterone return the clitoris to normal?

Mine did but it was a natural testosterone made by a pharmacist who studied in plant medicine.  It was apply just to the front of where the clitoris is or should be.

 

Where do you get the cream from ? 

It will take a bit of time Kippy.  It feels a bit like a grieving over loss kind of thing.  

What helped me was expressing my worries and disturbed feelings on this forum.  The support from this group has been so good.  I encourage you to participate in this site, browse through the varrious discussions and learn as much as you can about how others coped.  

With taking good care of things you will be able to live comfortably with LS in the end.  But as I said - it will takes some time and continuous effort.

Wishing you well.

Thank you for your support. I keep reading up on the internet but can't find anything that tells me if things are going to get worse, or if I will be able to control symptoms with medication and not lose my labia and clitoris and have none painful sex. Are you comfortable in sharing your story with me?

With good maintenance it will stay liveable.  Thing is, you can never let your guard down.  Regular check up by yourself and by a doctor remain important.  Regular treatment of self is good practise as well. I encourage you to build a certain routine you can live with.  Routine has helped me pull through.  

I would suggest - read the various discussion topics regarding LS on this site.  You'll find parts of my story woven in here and there.  It is important to see the writing of various people, since what works for one person does not necessarily work for another.

I use Clob for maintenance, the smallest amount.  Furthermore - I have been helped by rinsing with baking soda water in a Perin bottle (three pinches) and baking soda baths (one third of a cup)  and coconut oil to keep moist.  I dilate every other day.

I follow a strict diet - no sugar, no alcohol, no caffeine, no gluten, limited dairy (cheese is a sure trigger for me)  And I use a hormone replacement, together with supplement vitamins C and D3, for more resistance.  

And no - I'm not at all uncomfortable asnwering any questions you may have. 

 

Thank you Hanny, I feel so alone, I think about it all day, i'm in discomfort with it right now so it's on my mind. What is a Perin bottle. Have you lost any labia or clitoris and how long have you had LS, Is dilation keeping the vagina opening as it should be, you dilate eveyday, what do you use for that? Are you in a relationship and able to have sexual intercourse comfortably? Such a lot of questions I have bombarded you with, sorry, but realistically I think only people who have LS really can answer these questions, I don't think the doctors can so much. I really appreciate your help, how long did it take you to get your 'head' round LS. I hope you are happy to answer my questions and I'm not getting on your nerves, but I feel so alone. Thank you Tania

At first I too was totally occupied by this newly found illness that I probably had much longer than when finally diagnosed.  It took me approximate a year or so to have some form of peace with it and also, to build some kind of routine to make it liveable.  

It was new to me to check my bottom parts for instance.  And really, that should change.  There is breast examination but no vulva examination on a regular basis.  Now I return to my gyn every half year.  But I was so very far advanced with LS already that it took a long time before I was 'fully functional' again. The minor labia have totally disappeared. 

Further questions: A Perin bottle is a plastic bottle women receive in the hospital after giving birth to rinse their bottom parts. I use a dilation set (from Amazon) for dilating  every other day.  Intercourse in a gentil manor.

And yes, it is a lonely path to walk, if it wasn't for this forum where one can talk with people who know what you're going through.   

I am very grateful for your honest reply and am pleased to be able to share with others in the same situation. I don'tknow how long I have had LS for, I have spoken to a gyn doctor today and she is going to refer me to a counsellor.

I have only been ysing the steroid oitment for a week and don't feel any better yet. How are you doing?

It takes a while before you will experience any results.  I finally felt that I had some control over LS after a year.  Sorry to disappoint, but you have to look at things over a longer period of time.  

I'm doing reasonably well.  Had a bit of a set back recently, but it starts to become liveable again.  That's the thing - I slacked.  And that's not a good idea.

I wish there were a way to chat privately.....I am not comfortable in this forum that all the world can see😥

Thank you for responding, patience is very much needed with LS then, but good to know it can be controlled

Mary, you know you can always private e-mail me.

And you can do the same,  I am currently nursing a total knee replacement so get spread a little thin caring for myself.  Thank heaven I have a supportive husband. 

I think we live thinking we are the only ones affected by this disease so it's nice to know there's many many more like us.  I live in Virginia.  You?

Canada BC