Newly diagnosed with Lichen Sclerosus and feeling mad

Women's health
1

Hi I was diagnosed this week after 15 years of canesten coconut oil and misery. Thing is, now my problem has a name and treatment I feel quite crazy. Can't hold a thought or a mood. crying laughing swearing but at least no longer itching. scheduled for blood tests and a biopsy with a highly supportive Doctor. Did anyone else have this reaction? thanks for reading Adele

2

Hello Adele

I think a reaction like that is normal for any diagnosis, especially if you have been living with symptoms for a long time.

I have other conditions and am going through testing for another auto immune disease at the moment. A diagnosis is a strange mixture of relief, anger, frustration and more ...

I was diagnosed with LS in 2013 after a number of years with problems and doctors giving other explanations that didn't seem right.

I wish you well in your journey and you appreciate a good, supportive doctor - they are rarer than gold dust !

Regards.

3

thank you Paula!

I wish you all these best

xx

4

hi...think it is common when u r diagnosed to feel sad AND mad..."why did this happen to me" - "am I dirty"???? Your emotions r running wild...the most important thing u need to do is find a doctor (and depending what country u r living in that might not be so easy) and find out the best TX for U...it seems many women need to be on a steroid with LS and some need a hormone cream (such as Estrace) for the dryness and texture of the skin...using a mild soap (like Cetaphil or Dove) to wash your privates with as well as using an organic coconut oil for lubrication is also important - as of right now this "situation" is not curable BUT is treatable...hang in there and research where to go to be seen and treated...PROMISE - better days R ahead!!

5

i have had 4 biopsy on my vulva because cancer runs in my family .so far nothing but i went from having it down below o having it on the back of my legs on my stomach and having it on my back . when it first start it feels like you have gravel on you. i go to the dermatologist once a month to be checked and to have my blood tested. this crap on your skin itches like crazy. it took me forever to find a good dr.

6

I have NEVER heard or read about LS on the back, stomach, or legs...JUST the "V" and Anal area...am I wrong???

7

Hi I have it on my chest area, it shows as white patchy skin but does not cause me too much bother

8

Hi Adele, How are you doing? Is the itch still gone? Hope so. There are many oils and preparations for itch at least here in the states. Many have found relief with borax solution or baking soda in the bath water. Oral antihistamines work for many and you can get them at the drug store. Have you had your biopsy yet? I think we all know how you feel mentally and emotionally. It is a challenge to go forward with this disease especially if one has a very large, public job. It helps a lot to share your story with the rest of the women on here. If it was not for some of them I might be in the loony bin.

9

Hi and thank you

the itching has lessened. I'm checking in with my homeopath, my osteopath and others who have some experience of LS about creams etc.

I'm off to have a blood test now

so glad I found this forum

10

well i been to the dermatologist and they said i haven lichen s on my skin said when you get it one place then you also can get it on your skin. i go once a month for blood test and they usually up my pills that i take gor it. but with this you have white spots allover your body and it itches.

11

have you been to a dermatologist yet you might have what i have lichen on your skin. i am starting to get it on the back of my arms too and they really itch